DOCUMENT RESUME

ED 112 594 EC 073 819

AUTHOR Horejsi, Charles R.; Berkley,.Ann E.TITLE Deinstitutionalization and the Development of

Community Based Services for the Mentally RetardedYouth of Western Montana.

INSTITUTION Montana Univ., Missoula. Dept. of Social Work.SPONS AGENCY Office of Child Development (DREW), Washington,

D.C.PUB DATE Aug 75NOTE 104p.; See also EC 073 857

EDRS PRICE MF-$0.76 HC-$5.70 Plus PostageDESCRIPTORS Adjustment (to Environment); *Community Resources;

Exceptional Child Research; Group Living; Interviews;, *Mentally Handicapped; Parent Attitudes; Prevention;

Social ServicesIDENTIFIERS *Deinstitutionalization; Montana

ABSTRACTReported are findings and recommendations from the

.University of Montana's Project on Community Resources andDeinstitutionalization which were derived from interviews with 86service providers and nine social workers and from surveys of 61retarded persons and their parents. It is explained that serviceproviders most frequently identified the need for sheltered livingarrangements to prevent institutionalization and depopulate theinstitutions, and that social workers felt community education andgreater resources would increase the level of community acceptance.Summarized are parental views on such topics as satisfaction withtheir child's living arrangement, lack of community services, andconfusion over service terminology. Described are recommendations forsuch service aspects as planning, program development and servicecoordination (including the need for program goals to conform to thedevelopmental model and normalization principles); advocacy;placement procedures (including participation in decision making byresidents and their parents or advocates); and residential services(including development of aggressive program for foster homerecruitment). (CL)

ci

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* materials not available from other sources. ERIC makes every effort ** to obtain the best copy available. Nevertheless, items of marginal *

* reproducibility are often encountered and this, affects the quality *

* of the microfiche and hardcopy reproductions ERIC makes available *

* via the ERIC Document Reproduction Service (EDRS). EDRS is not* responsible for the quality of the original document. Reproductions ** supplied by EDRS are the best that can be made from the original. *

***********************************************************************

US DEPARTMENT OF HEALTHEOL,CATION S. WELFARENATIONAL INSTITUTE OF

ITOLCATIONTHIS 00,,..n.it,t1 AS BEEN REPRO

A-, 41 RELE,s+EG FROM4E. ANIZATION ORIGIN

a FoNIS 0 EA OR OPINIONSNOT -f" ESSARILY REPRE

SEW FR.IAI. NATIONAL INSTITUTE OFEDULATION POSITION OR POLICY

ELOP A8E0 SERVICE'

'FO

Ly RETARDED YOUTH-OF WESTERN MONTANA

4

',Prepared by

-CHARLES. R.,'HOREjSI-ainct

ANN113: '1304.4.av,

n Project- On oommunitY ,Resou ecet and pelnatitutipnalization

bebitrtnient ,WOrk-

%University, ofsMohlanit

DEINSTITUTIONALIZATION AND 1TIE DEVELOPMENT OP

COMMUNITY BASED SERVICES FOR THE

MENTALLY RETARDED YOUTH OF WESTERN MONTANA

Prepared by

Charles R. Horejsi

and

Ann B. Berkley

Project on Community Resources and Deinstitutionalization

Department of Social Work

University of Montana

Missoula, Montana

August, 1975

Project Staff

Morton L. Arkava, Ph.D. ° Fern L. Berryman

Project Director Secretary

Ann B. Berkley Charles R..Horejsi, D.S.W.

Researdh Assistant Principal Investigator

This project was supported in part by Grant #90-C-341

Office of Child Development

U.S. Department of Health, Education, and Welfare

I 3

ri

TABLE OF CONTENTS

Page

INTRODUCTIONWESTERN MONTANAPURPOSE OF PROJECTPROJECT CONTEXTPROJECT STAFFRESEARCH DESIGN AND METHODPROVIDER/DECISION-MAKER DATACLIENT/EMILY DATAREPORTED DATA AND RECOMMENDATIONS

AN OVERVIEW OF BRSUI RESIDENTS AND SERVICE NEEDSSELECTED CHARACTERISTICSPROJECTED LIVING ARRANGEMENTSSERVICES NEEDED BY A GROUP OF YOUNG BRSUI RESIDENTSSERVICES NEEDED BY 26,BRW RESIDENTS WITHIN ONE YEARAFTER PLACEMENT

1

1

1

2

6

6

8

12

15

16

16

17

18

20

FINDINGS DERIVED FROM INTERVIEWS WITH PROVIDERS AND OTHERSOURCES OF DATA ON EXISTING AND NEEDED SERVICES 23

OPINIONS OF EIGHTY-SIX PROVIDERS ON SERVICE NEEDS AND PROBLEMS 23Characteristics of Providers 24Service Coordination and Integration 24Prevention, of Institutionalization 26Depopulation of Institution 27Community Acceptance of the Deinstitutionalized Persons 28

COUNTY SOCIAL SERVICES 29

Number of Clients Served 30Persons not Receiving Public Social Services 30Caseload and Workload 31Needed Training 32

Concerns Expressed by the Workers 32Placement and Follow Along 33

UNMET SERVICE NEEDS 34

UNMET EDUCATIONAL NEEDS 36PREVALENCE OF MENTAL RETARDATION 37

CHARACTERISTICS OF THE STUDY POPULATION YOUTH AND THEIR PARENTS 40CHARACTERISTICS OF YOUTH 40

Level of Retardation 40Age 41Sex 41Seizures 41Cerebral Palsy 42Hearing and Sight 42Speech Problems T 42Mobility 43Toilet Training 43Multiple Handicaps 44

ii

TABLE OF CONTENTS (continued)Page

CHARACTERISTICS OF THE PARENTS 44

Age and Ethnicity 45

Marital Status and Family Size 45

Educational Level and Occupation 46

County of Residence 46

FINDINGS DERIVED FROM INTERVIEWS WITH PARENTS AND OTHER

SOURCES OF CLIENT/FAMILY DATALIVING ARRANGEMENTSPARENT'S SATISFACTION WITH CHILD'S LIVING ARRANGEMENT

PARENT'S PREFERRED LIVING ARRANCOMPARISON OF BRS&H PROJECTED LIVING ARRANGIP 1 AND

PARENT'S PREFERRED LIVING ARRANGEMENTPARENT'S VIEWS OF PLACEMENT OUT OF BRS&HPARENT SATISFACTION WITH BRS&HREASONS FOR INSTITUTIONAL PLACEMENTCHILD'S AGE AT INSTITUTIONAL PLACEMENTPARENT'S AGE AT PLACREASONS FOR NOT INSTITUTIONALIZING THE CHILDPARENT'S VIEWS ON PREVENTION OF INSTITUTIONALIZATIONOPINIONS ON CLOSING BRS&HLACK OF SERVICES IN THE COMNITYTRANSPORTATIONFINANCIAL STRAINSATISFACTION WITH EXISTING COMMUNITY SERVICESFEARS OVER PROGRAM PERMANENCEKNOWLEDGE AND UTILIZATION OF EXISTING SERVICESCONFUSION OVER SERVICE TERMINOLOGYINFORMATION AND REFERRAL (I & R)

RESPITE CARETRAINING AND EDUCATIONCOUNSELING SERVICESSHELTERED WORKSHOP AND SHELTERED EMPLOYMENT SERVICESEVALUATION AND DIAGNOSTIC SERVICESMEDICAL CAREDENTAL CARERECREATIONNARC MEMBERSHIP

GI I

48

48

49

49

50

51

51

52

53

54

54

55

56

57

58

59

6060

61

64

64

64

65

66

68

6970

70

71

71

RECOMMENDATIONS 73PLANNING PROGRAM DEVELOPMENT AND SERVICE COORDINATION 73

QUALITY CONTROL OF SERVICES 75

ADVOCACY 76

COUNTY SOCIAL SERVICES 76

PLACEMENT PROCEDURES 77

PREVENTION OF INSTITUTIONALIZATION 80

RESIDENTIAL SERVICES 80

DIAGNOSTIC AND EVALUATION SERVICES 83

FOLLOW ALONG AND CASE MANAGEMENT 83

iii

5

TABLE OF CONTENTS (continued)

Pale

INFORMATION AND REFERRAL 86ECONOMIC ASSISTANCE 86RECREATION 87TRANSPORTATION 87MEDICAL AND DENTAL SERVICES 88EDUCATIONAL SERVICES 89PROTECTIVE SERVICES AND GUARDIANSHIP 90OTHER SUPPORT SERVICES 90COMMUNITY EDUCATION AND INVOLVEMENT 92THE NAIVE OFFENDER 93MANPOWER DEVELOPMENT 93ARCHITECTURAL BARRIERS 94

iv

PREFACE

The purpose of this report is to describe the activities which were

part of the Project on Deinstitutionalization and Community Based Services

for the Mentally Retarded, present a summary of findings and offer a set

of recommendations. It is hoped that this report will be of use to

parent groups, service providers, program planners and others in Montana

who are concerned with the creation and expansion of community based

services.

It should be noted that this report has been prepared for a nonprofes-

sional audience. Professional jargon and technical concepts have been

avoided wherever possible. It is also important to note that this report

is one of two prepared by the Project. A second report, Deinsiitutionali-

zation and the Development of Community Based Services for the Mentally

Retarded: An Overview of Concepts and Issues, reviews problems and issues

related to deinstitutionalization and the creation of community based

services. A reading of that report will aid in the understanding of

recommendations offered here.

v

INTRODUCTION

WESTERN MONTANA

The Project on Deinstitutionalization and Conununity Based Services for

Mentally, Retarded Youth focused on Montana's Region V, an essentially

rural, mountainous seven county area of Western Montana. The counties of

Missoula, Flathead, Lake, Ravalli, Lincoln, Sanders and Mineral make up

this Region. It is about 242 miles in length and about 100 miles in width.

In area it consists of 19,339 square miles, an area over one-half the size

of Indiana or about the.size of New Jersey, Connecticut, and

Massachusetts combined. In land area, Region V is the smallest of five

regions in Montana. According to the 1970 census, 154,691 persons lived

in Region V. This was 22.30 of Montana's population of 694,409. The

Region's density is eight persons per square mile.

Forest products, agriculture and tourism are central to the Region's

economy. The Region's largest city, Missoula, has a population of about

35,000 and serves as a major trade, medical and educational center.

Kalispell, the second largest city in the Region, has a population of about

12,000 and is located 115 miles north of Missoula. The third largest city,

Libby, has a population of 3,286 and is 190 miles from Missoula and 89 miles

from Kalispell.

PURPOSE OF PROJECT

The four objectives of this research effort were to (1) increase

knowledge of the factors, process and procedures affecting the'release of

1

2

mentally retarded youths from the Boulder River School and Hospital;

(2) increase knowledge of the social, educational, financial and health

needs of deinstitutionalized youths and their families; (3) prepare

recommendations and formulate feasible approaches to the development and

delivery of needed mental retardation services in Western Montana; and

(4) communicate findings and recommendations to relevant organizations and

decision-makers responsible for the planning and development of mental

retardation services and programs. In order to reach these four basic

objectives, data were gathered from a variety of sources (parents of retard-

ed youths, retarded persons, providers of service, Boulder River School

and Hospital staff, State level planners and administrators, etc.) and in

a number of ways (indepth interviews, participant observation, mailed

questionnaires, etc.).

The overall goal of the Project was to develop practical information

and feasible recommendations which would facilitate deinstitutionalization

and the development of the community based services in a rural area. Since

the Project staff was committed to the'notion that research of this type

should be utilized rather than stored in a library, great emphasis was

placed on making the research process useful and useable to service pro-

viders, parent groups, program planners, legislators, etc. This commitment

influenced decisions on exactly what was studied and the methodology used.

PROJECT CONTEXT

Officially, this project began September 1, 1974, and ended August 31,

1975. It was conducted during a year when significant and far reaching

legislative decisions were made concerning deinstitutionalization and

P')

3

services for the mentally retarded in Montana. The Project was clearly

affected by these decisions and, to some degree, probably affected the

decisions that were made. A brief overview of 1974 and 1975 events are

necessary to understand many project activities.

The initial project proposal was born out of a concern over the lack

of community based services for retarded persons in Western Montana. Num-

erous parents and providers of service shared this concern and endorsed

the proposal. The proposal was written in March, 1974, while Montana's

institution for the mentally retarded, the Boulder River School and Hospital

(BRSEIH), was in the turmoil of an employee strike. The BRSEIH is Montana's

only full range institution for the care, treatment and training of mentally

retarded persons. Boulder, the institution's host community, has a popula-

tion of 1,300 and is located 30 miles from Helena and 37 miles from Butte.

The BRSEIH is a considerable distance from Region V communities. It is 141

miles from Missoula, 256 miles from Kalispell and 331 miles from Libby.

Like many state institutions, the care, treatment and training provided

by BRSEIH has been inadequate for many years. The March, 1974, strike called

this fact to the public's attention. Basically, the strike was caused by

a failure of the 1974 Montana Legislature to adequately fund BRSEIH and other

state institutions. The National Guard was mobilized to help staff BRS&H

during the strike. News Coverage and numerous reports provided by the

guardsmen served to further inform the public of the deplorable conditions

at the BRW. When the strike finally ended, the stage was set for the

1975 Legislative session. State institutions were to be the. 'number one'

priority and issue.

10

4

Community based alternatives to institutional care have been slow to

develop in Montana. A lack of funding has been a major obstacle. It is

interesting to note that House Bill 412 (Developmental Disabilities Services

and Facilities Act) which provided for the establishment of community based

services was passed but not funded by the 1974 Legislature.

In July, 1974, several months after the strike, a severe staff shortage

forced BRSUI to place about 100 residents into "emergency placements,"

mostly nursing homes. This reduced the BRSUI resident population to slightly

more than 400. The need for such emergency placements was an additional

symptom of the many problems which plagued BRSUI. High staff turnover, lack

.of trained personnel, public outrage over several accidental deaths, and

inadequate physical facilities were some of the more tangible problems at

the institution.

In September, 1974, the same month this Project got underway, the

Governor's Office, key service providers, parent groups and interested

citizens began considering proposals and options which would address the

BRSW crisis. In preparation for the 1975 Legislative session, public

meetings were held throughout the state. 'Grass roots' ideas and support

were invited and obtained. Parents and parent groups voiced strong support

for the development of community based alternatives to institutional care.

Thus, funding for the Developmental Disabilities Services and Facilities

Act of 1974 became a prime goal.

On November 8, 1974, the United States Justice Department filed a civil

action against the BRSEIH on behalf of residents and potential residents.

Essentially, this was a right to treatment suit. At the time of this writ-

ing, further action on this right to treatment suit is pending.

5

The 1975 Legislative session began in January. At this time Montana

found itself in a peculiar dilemma. BRS&H was clearly inadequate and faced

a law suit. Massive amounts of money would be needed to upgrade the insti-

tution. Budget requests placed future institutional care cost at about

$25,000 per resident, per year. Money would not, however, solve the inher-

ent problems of institutional -type care. Depopulation seemed essential

and had been recommended in a September 1974 Staff Report to the Joint

Interim Subcommittee on Finance and Claims. The report, Community Alterna-

tives to Institutionalization, stated, "If proper treatment is to be pro-

vided to the residents at BRSW, the population must be reduced as quickly

as possible to 252--the number of Medicaid certifiable beds now available."

The dilemma, of course, was that the community based services necessary to

reduce the BRSEill were lacking. Thus, the Legislature was being asked to

invest large amounts of money in both the institution and community based

services. This was a situation which many legislators found difficult to

understand. Many favored funding one or the other but not both. Lobbying

by parents, providers and the retarded themselves did, however, convince

the Legislature of the need for community based services.

In addition to providing a substantial funding increase to BRW-I, the

1975 Legislature passed H.B. 353, an ammended version of the 1974's H.B. 412.

For the next biennium, over five million state dollars were provided for the

development of community based services for the developmentally disabled.

When matched with Title XX monies, substantial funding will be available.

A rather unique feature of H.B. 353 is the creation of five Regional

Councils throughout Montana which will permit consumers, parents and local

12

6

citizens to plan and make decisions on needed services in their area.

State purchase of service contracts will be used to fund local programs

approved by Regional Councils. Thus, Montana citizens and communities now

have an opportunity to develop services which will assist in the prevention

of institutionalization and permit over 200 BRSUI residents to return to

the community. The BRSUI population is to be cut in half by 1977.

PROJECT STAFF

Paid Project staff consisted of a Principal Investigator and a

Research Assistant, both full-time, and a three-fourth's time Secretary.

The unpaid Project Director donated the time necessary to handle various

administrative aspects of the Project.

RESEARCH DESIGN AND METHOD

The term 'research design' refers to the logical strategy of a study.

The overall strategy of this project can best be described as a diagnostic

or descriptive research design utilizing comparison groups and coupled

with features of community need assessment and action research. According

to Kahn (1960), the diagnostic descriptive design is commonly used when

the purpose of the research is to "...assess characteristics of phenomenon

or to describe relationships between variables." (p. 58) It is frequently

used when the research is related to administrative and professional ques-

tions and is of particular "...value for planning, policy selection and

program implementation." (Kahn, 1960, p. 53)

The term 'action research' refers to a process-oriented approach which

13

7

is intended to increase the chances that research findings and recommenda-

tions will be understood, accepted and implemented by decision-makers and

program planners. Carter (1952) formulated several principles of action

research. Among these are the following:

The problem(s) for research should stem from a recognized need

Mather than [an] hypothesis generated from the personal interests

of the research specialist.

For maximum effectiveness, those who are expected to implement

the recommendations should participate in the study process.

Action research in community planning implies teamwork amongresearchers, other professionals, technicians and lay citizenry.

(pp. 23-28)

Not infrequently, research efforts yield a written report which 'sits on

a shelf' and has little or no impact on decision makers. Adherence to

principles of action oriented research is intended to facilitate research

utilization.

For purposes of explanation, it is helpful to separate two broad

sources of data which yielded the research findings and provided the basis

for recommendations offered in this report. One category includes specific

case by case information gathered on four groups of retarded persons, their

parents and their service needs. As used here, this category will be termed

client/family data. The second category consists of information secured

from service providers,.program administrators, BRSW staff, decision

makers, etc. whose perspectives and concerns were community-wide, regional

and sometimes state-wide. Data gathered from these persons focused, for

example, on the retarded and services in general, rather than on case data.

In this report, this second category will be termed provider /decision - maker data.

14

PROVIDER/DECISION-MAKER DATA

Throughout this year-long research project, information was gathered

from and exchanged with providers, BRSU1 staff, representatives of Associa-

tion for Retarded Citizen Chapters, state program planners, selected legis-

lators, etc. There was no clear beginning or end to this information gather-

ing process. Clearly it was an ongoing, two-way exchange of information.

During the early months of the Project, the researchers visited

numerous programs and providers of service in Western Montana. In addition,

meetings such as those of the Association for Retarded Citizens, Council on

Exceptional Children and Developmental Disabilities Regional Council were

attended. The researchers met or acqL4red the names of many professionals

and citizens having a special interest in services for the retarded. A

type of reputational technique was used to identify key persons within this

service 'community.' As the researchers talked with individuals or groups

they asked for the names of other persons who should be contacted. Persons

named most often were assumed to be those who were most influential and

knowledgeable within the service system of Western Montana. Special efforts,k

both formal and informal, were made to secure their ideas and opinions.

Between December, 1974, and February, 1975, an attempt was made to

secure more systematic information from these providers and program admin-

istrators. A questionnaire was formulated which asked numerous questions

about needed services, priorities, needed changes in the existing service

system and views on deinstitutionalization. For the most part, responses

were secured by mail but in some cases personal interviews were used to

secure this data. Information was gathered from a total of 86 providers

15

and/or administrators.

The two researchers scheduled and/or attended nearly 200 separate meet-

ings with individuals or groups related, directly or indirectly, to the

planning and provision of services for the retarded or to some aspect of

deinstitutionalization. Several of these meetings were with State Legisla-

tors or other elected officials such as County Commissioners. Such meetings

yielded both hard and soft data.

In keeping with the Project's action orientation, the researchers were

deeply involved in issues before the 1975 Montana Legislature and worked

closely with Representative Ann Mary Dussault, a Missoula Legislator, who

introduced H.B. 353 which proposed substantial changes in the Montana

Developmental Disabilities Services and Facilities Act of 1974. In April,

1975, House Bill 353 was passed and funded, thus providing over five million

state dollars for community based services and deinstitutionalization.

Involvement in this legislative process provided the researchers with a

unique perspective on the economic and political aspects of deinstitution-

alization.

During the year the project staff prepared numerous brief reports

and statements designed to be of practical assistance to providers, parent

groups and decision makers in the Region. Some of these were the following:

'Services for the Mentally Retarded: Some Facts and Comments;' Information

Update on H.B. 353;"D.D. Service Terminology;' Follow Along Services;'

'A Summary of Opinions Offered by D.D. Service Providers in Western Montana;'

'Prevalence of Mental Retardation;"D.D. Related Services in County

Departments of Public Welfare;' Sources of Information on Mental Retardation;'

etc.

E: 16

10

During the year the researchers made several presentations at public

meetings and conferences (e.g., the Governor's Blue Ribbon Commission on

Mental Health, Montana League for Nursing, Ravalli County Grange). The

researchers also assisted in the preparation of several news releases and

feature articles on developmental disabilities and the need for deinsti-

tutionalization.

An additional type of activity generated by this action oriented

project was an out-of-state program visit. Visits to mental retardation

programs in other communities and states can be a fruitful source of new

program and planning ideas,and a. stimulus to program development in ones

own area. In December, 1974, thirteen people from Western Montana made

such a trip to Spokane, Washington. It was sponsored by the Project. The

purpose of the trip was to visit and observe a variety of services for the

mentally retarded and thereby gather information which would be helpful in

the planning and development of similar services in Montana. Among those

making the trip were a regional director of mental health services, a group

home supervisor, the administrator of a region-wwide children's diagnostic

center, a regional supervisor for rehabilitative services, the president of

an A.R.C. Chapter, a public school administrator, a nursing home administra-

tor, the directors of two sheltered workshop programs, a social worker from

BRSW, an agency board member and the two researchers who arranged the trip.

The participants were drawn from six Montana communities. Distances between

these communities ranged from 50 to 332 miles.

Indigdual program visits were selected and scheduled by staff at the

Spokane Office of Developmental Disabilities (O.D.D.). Two O.D.D. staff

members accompanied the participants, sharing ideas and answering many

11

questions. A trip of this sort provided the participants with: (1) an

opportunity to meet with knowledgeable persons from another state and observe

programs operating within a different administrative and social environment

and (2) an opportunity to meet informally with persons from ones own state

and learn of each other's programs, plans and concerns. Needless to say,

the logistics of planning a two-day trip required many hours and many

telephone calls and letters. The possibility of such a trip was, however,

received with enthusiasm by those invited to participate. A willingness

to be on the road at 7 a.m. of the first day, crossing snow covered mountain

passes one week before Christmas, not returning until 10 p.m. on the second

day (39 hours later) and riding in a mini bus for 450 miles is evidence for

the conclusion that the participants were eager for the learning experience

the trip offered.

In August, 1975, the Project and the Montana Association for RetardedmIt^,

Citizens jointly sponsored a two-day workshop on Program Analysis of Service

Systems and Normalization presented by Linda Glenn, Executive Director of

the Eastern Nebraska Community Office of Retardation. The workshop was

attended by parents, providers of services and program planners from across

Montana. It was designed to be of use to persons directly involved in the

development of community based services under the provision of H.B. 353.

Throughout the year the Project staff gathered information from other

states (e.g., Nebraska, California, Connecticut, North Dakota, etc.).

Whenever possible this information was passed on to parent groups, providers

and state level planners.

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CLIENT/FAMILY DATA

In order to secure an understanding of the factors and issues associated

with institutionalization, the prevention of institutionalizatio, and the

placement of the institutionalized retarded into community programs, data

were gathered on four groups of mentally retarded youth who were less than

20 years of age on September 1, 1974, and related to Region V (Western

Montana) in one of the following ways:

GROUP I: BRSUI residents, as of September 1, 1974 who werefrom Region V. (abbreviation used--BRS&H)

GROUP II: Former BRSUI residents who were from Region V andwho were placed in the Region after September 1, 1972.(abbreviation used--P.O.)

GROUP III: Retarded youth from Region V who were evaluated atBRS&H after September 1, 1972 but not admitted to

the Institution. (abbreviation used--EVAL)

GROUP IV: Selected retarded youth living in Region V on

September 1, 1974 who had never received servicefrom the BRW. (abbreviaTEETused--NEV)

A major source of client and family data were indepth interviews with

the parents of these retarded y, ath. These semi-structured interviews

generally lasted from one and cle-half to five hours. Supplemental data

were drawn from BRSUI records .end /or obtained directly from BRS&H staff.

Where possible, data were also gathered directly from retarded persons.

For clients within Group IV, supplemental data were secured'from the records

and staff of the Western Montana Child Development Center, a regional

diagnostic center.

In October, /04, an examination of BRSW statistical data identified

54 persons who met the criteria of Groups I, II and III. At that time

only case numbers and selected descriptive data on these 54 individuals

13

were available to the researchers. The release of more detailed information

including the names and addresses of parents was contingent upon a formal

release of information procedure. Securing the names and addresses of the

parents or guardians was a necessary prerequisite for arranging research

interviews and securing data directly from BRSW records. A letter signed

by the Acting Superintendent of BRSW was sent to 51 of the parents or

guardians. (Because three of the former BRSW residents had died no attempt

was made to contact their parents.) It briefly explained the study and

requested the return of a signed authorization for the release of informa-

tion. Several weeks later a second letter was sent to those who did not

respond to the first one. Altogether, releases were obtained from 38 of

the 51 parents or guardians. One set of parents could not be located; the

others presumably chose not to provide a release of information.

Once the releases had been secured the researchers attempted to

arrange interviews with the parents or parental surrogates. Of the 38

families, interviews were obtained with 36. Two could not be located or

decided not to participate subsequent to signing the release.

Most of the parents of the mentally retarded youth comprising Group IV

were initially contacted by Child Development Center (CDC) staff and asked

if they would participate in the study. If they agreed, a signed release

of information was secured. This permitted the researchers to contact the

family and have access to CDC records. A total of 19 parent interviews

were secured in this manner. An additional six parent interviews were

arranged through Association for Retarded Citizens(ARC) chapters in the

Region. A deliberate attempt was made to secure interviews with parents

F... 20

14

from each of the seven counties in the Region.

It is important to note that the release of information procedures

used to protect the confidentiality of records and freedom of choice

constricted the study population. Moreover, factors of feasibility and

ordinary administrative constraint's within the BRSUI did not permit adher-

ence to sampling techniques which would have resulted in a population known

to be representative. In other words, data were not obtained on those who,

for one reason or another, elected not to participate in this study. How-

ever, the fact that 36 of 51 possible sets of parents of youths in Groups I,

II, III chose to participate indicates that a cross-section may have been

reached.

The same constraints affected families in Group IV. The C.D.C. staff

made deliberate efforts to secure what they considered to be a cross-

section of Western Montana parents who had not sought service from BRSUI

for their retarded child. While it is reasonable to assume that the

families selected by this method were fairly typical, it cannot be said

that they were truly representative in the statistical sense. It must also

be noted that all of the families who participated in this study were ones

who had sought service from the BRS&H, CDC or were affiliated with the ARC.

It is quite possible that some families have not utilized any of these

services or programs. Such families were untouched by this study.

ThPoletically speaking, hundreds and even thousands of bits of informa-

tion could have been gathered on the retarded youths and their families.

Since it was not feasible to gather all possible data, choices had to be

made on what data would be sought. Utilization criteria guided these choices.

15

Prior to formulating interview schedules and questionnaires, numerous

parents and providers were interviewed in an attempt to identify the types

of data which could be utilized:to plan and improve community based services

for the retarded and further successful deinstitutionalization in Western

Montana. In keeping with the action-orientation of this project, their

suggestions and requests for information had more to do with the selection

of a study focus thaddid the researcher's interests and curiosities.

REPORTED DATA AND RECOMMENDATIONS

Rather than attempt to report voluminous detail which is often diffi-

cult to comprehend, this report focuses on those highlights and generaliza-

tions which can be utilized in program development and planning for

deinstitutionalization. In other words this report focuses on findings

which can be translated into action. Special effort was devoted to the

task of preparing a report which utilized a minimum of professional jargon

and one which would be understandable to the nonprofessional reader.

Wherever possible recommendations or suggestions have been offered by

the researchers. A list of recommendations appear as a final section of

this report. (see pages 73-95)

22)

AN OVERVIEW OF BRStUI RESIDENTS

AND SERVICE NEEDS

SELECTED CHARACTERISTICS

As of April 1, 1975, 399 persons resided at the BRW. This number

did not include the approximately 90 individuals who remained on "emergency

placements," many of whom were in nursing homes throughout the state. Of

the 399 at BRSH, 239 were males and 160 were females. Age distribution

and level of retardation is shown below.

AGE GROUPS

UNKNOWN NORMAL

LEVELS OF RETARDATION

PROFOUND TOTALMILD MODERATE SEVERE

0 5 3 0 0 0 0 7 10

6 - 12 0 0 2 2 5 41 50

13 - 17 0 0 5 5 16 51 77

18 - 21 0 0 5 23 38 63 129

22 - 25 0 0 2 1 2 14 19

26 + 0 2 6 20 24 62 114

TOTAL 3 2 20 51 85 238 399

It is noteworthy that 238 (59.6%) were profoundly retarded and another 85

(21.3%) were severely retarded. In other words, 81% were either profoundly

or severely retarded. Less than Z396 function at the mild and moderate range.

The Report to the Legislators of the State of Montana on the Boulder

River School and Hospital (1974) states that 22% of the BRS&H residents are

lea

17

blind or visually impaired, 13% are deaf or hearing impaired, 7.4% have

both vision and hearing defects, 32% have cerebral palsy, 34% have epilepsy

and 18% have both cerebral palsy and epilepsy. The report further indicates

that almost 50% are not toilet trained, more than one-half need help bathing

and over one-third need help eating. About 20% are unable to walk and one-

third were non verbal. Needless to say, these data point to some of the

problems involved in deinstitutionalization for the mentally retarded.

Despite the many needs of the residents, BRSUI has not been successful

in providing services. According to the report cited above, the average

number of supportive services available to each resident was 1.2. Support

services are those beyond custodial care or those not necessary for physical

survival (e.g., education, recreation, physical therapy, training, counsel-

ing, etc.). Sixty-six percent of the residents received none or only one

supportive service.

PROJECTED LIVING ARRANGEMENTS,

In September, 1974, the total BRSUI caseload was 527. Included in

this total were approximately 400 persons living at the institution and

about 100 who had been placed in community health care facilities (mostly

nursing homes). It was in July, 1974, that 110 residents left the institu-

tion on "emergency placements" because of a critical staff shortage. By

December, 1974, 91 of the 110 remained in community health care facilities

whereas 16 had returned to BRSUI, one had been discharged, one had been

placed in his parent's home and one had died.

4In September, 1974, BRSUI staff reviewed the entire caseload and

!IVA

44

18

formulated a 'projected living arrangement' for each client. These pro-

jections were one method of determining the types of live ig arrangements

which would have to exist in order to effect total depopulation. The

projections were based on the staff's knoWledge of client functioning and

need bpt without regard to the actual availability of appropriate community

based services to meet these needs. The projected living arrangements are

shown below.

Group Home 256

Group Home (Handicapped) 14

Foster Home 80

Foster Home (Handicapped) 42

Foster Home or Group Home 52

Foster Home or Group Home (Handicapped) 21

Skilled Nursing 8

Skilled Nursing (Handicapped) 29

Treatment Center 17

Treatment Center (Handicapped) 1

Independent/semi-independent 7

TOTAL BRSUI CASELOAD (September, 1974) 327

It is important to note that 465 of the 527 were in need of either a

foster home or group home. Because of physical handicaps, 77 of the 465

needed homegivith special structural accomodations (e.g., wide doors for

wheel chairs, special toilet facilities, etc.). Of the total September,

1974, BRSUI caseload, 156 had significant physical handicaps.

SERVICES NEEDED BY A GROUP OF YOUNG BRS&H RESIDENTS

In April, 1975, Project staff and BRSW personnel reviewed the service

needs of 26 BRSUI residents from Western Montana who met age criteria for

inclusion in the study population. Thus, all were less than 20 years of

age on September 1, 1974. Older residents were not included in this review.

mt. 25

;Cr

19

The parents of 15 of the 26 residents had been interviewed by the

Project staff prior to the 'case by case' review at BMW. These 15 made

up Group I of the study population. Releases of information had not been

secured on the other 11. Thus, BiiSW discussed their service needs but did

not reveal identifying data to the researchers.

Of the 26 residents, three were mildly retarded, two were moderately

"retarded, three were severely retarded and eighteen or over three-fourths

were profoundly retarded. Fourteen were females, twelve were males.

Essentially, the BRSW staff attempted to identify those services which would

be needed by each resident within one year after placement out of the insti-

tution. Thus, the services identified by this process were ones which

would need to exist in Western Montana if these residents were to be placed

in the community and appropriately served by community based programs. It

is important to emphasize that many of the needed services identified by

this process were neither available at BRSW nor in Western Montana. In

other words, the process simply identified services needed by each resident,

irregardless of whether the resident could receive this service at BRSW

or whether the service was currently available in the community.

Obviously, all of the 26 would need more than a single service. The

totals shown below reveal the number of persons needing each particular

service. Some projections invisioned progression from one type of service

to another even within one year after community placement. The service

classification used in this process was one utilized at BRStH.

26

SERVICES NEEDED BY 26 BRS&H RESIDENTS

20

WITHIN ONE YEAR AFTER PLACEMENT

EVALUATION SERVICES: TREATMENT/TRAINING SERVICES:

Physical Eval 12 Infant stimulation 0

Medical Eval. (annual) 25 Surgical 0

Genetic Eval 0 Dental 6

Other Medical Eval 2 Psychiatric 0

Dental Eval 25 Psychological 6

Opthamological Eval 18 Dietary control 1

Psychological Eval 23 Chemotherapy (medication) 4

Psychiatric Eval 1 Physical therapy 8

Vocational Eval 11 Occupational therapy .8

Educational Eval 24 Behavior Modification 22

Behavior Modification Eval 26 Toilet training 14

Deaf-Blind Eval 2 Eating training 11

Recreation Eval 26 Dressing training 16

Speech Eval 20 Compliance training. 2

Hearing Eval 15 Speech & Language Development 22

Social Eval 24 Personal Hygiene training 20

Economic Eval 15 Social Skills training 25

Legal Eval 8 Pre Vocational training --I3

Environmental/Cultural Eval 8 Elimination of Maladaptive/Inappropriate Behavior 18

DIAGNOSTIC SERVICES: Speech therapy 14

Counseling or other services 9

Psychological Diagnosis 1 Genetic Counseling 0

Social Diagnosis 7 Other Counseling 1

Medical Diagnosis 4 Appliance services 4

Other training 10

DAY CARE SERVICES. 24

COUNSELING SERVICES. 1

EDUCATION SERVICES:Family counseling 13

Pre academic 2 Vocational counseling 5

Deaf-blind 2 Religious counseling 0

Regular educa*ioh 0 Counseling related to undesirable

Special education 17 social behavior 1

Pre school education 1

Deaf education 1 INB.744kTION & REFERRAL. 12

SHELTERED EMPLOYMENT. 1 FOLLOW ALONG SERVICES. 26

Evaluation 5 PROTECTIVE & SOCIAL-LEGAL SERVICES:Work adjustment 5

Occupational skill therapy 6 Protective (social) 25

Protective (legal) 26

RECREATION SERVICES. 14tAI

TRANSPORTATION. 25

FOOD, SHELTER, CLOTHING. 26

FINANCIAL SUPPORT. 26

21

Many of the services identified above are ones needed by the severely and

profoundly retarded. At the time of this writing, few Mbntana communities

have appropriate services for such persons. It is important to note that

all or nearly all of the 26 individuals need certain services such as

protective services, follow along, financial support, recreation, regular

medical and dental care, etc. Also, most individuals need behavior

modification services for the elimination of maladaptive or institutional

behavior.

Projected living arrangements had been formulated for 32 of the

persons who were part of the study population, the 26 BRSH residents

plus six others who had been placed out of BRSUI but were still part of the

official BRSUI caseload. These projections indicated a great need for

foster homes. The available information made it possible to compare the

actual living arrangement with the projected living arrangement. This

yielded one measure of appropriateness in placement. These comparisons

are shown below.

Group HomeGroup Home (Handicapped)Foster HomeFoster Home (Handicapped)

PROJECTED LIVINGARRANGEMENT

1

1

14

4

ACTUAL LIVING ARRANGEMENTIN BRSUI

1

1

14

2

IN NURSING HOME

0

0

0

2

Foster Home or Group Home 6 5 1

Skilled Nursing 4 1 3

Natural Home or Foster Home 1 1 0

Treatment Center 1 1 0

TOTAL 32 26 6

22

This comparison shows that only the three clients in skilled nursing

facilities were in an appropriate living arrangement. All of the others

are in an arrangement which differed_from the projected living arrangement

based on client needs. Stated differently, 29 of the 32 were in inappro-

priate living arrangements.

These data and comparisons indicate that many BRS&H residents could

live and function outside the institution if community based alternatives

were available. Group homes and foster homes are among the most needed

living arrangements. These data also point to an overuse and inappropriate

use of nursing homes as alternatives to institutional care.

Vin 29

FINDINGS DERIVED FROM INTERVIEWS WITH PROVIDERS

AND OTHER SOURCES OF DATA ON EXISTING AND NEEDED SERVICES

OPINIONS OF EIGHTY-SIX PROVIDERS

During the early months of the project, the staff visited numerous

programs and providers of service in Western Montana. In addition, meetings

such as those of the Association for Retarded Citizens, Council on Excep-

tional Children and the D.D. Regional Council were attended. As a result

of these activities, the project staff met or acquired the names of many

professionals having a special interest in services for the mentally re-

tarded. Informal discussions and unstructured interviews with many of these

providers were used to obtain information on programs, plans and problems

in the Region.

Between December, 1974, and February, 1975, an attempt was made to

secure more systematic information from providers and program administrators.

A questionnaire was formulated which asked numerous questions about needed

services, priorities, and needed changes in the existing service delivery

system. For the most part responses to the questionnaire were secured by

mail but in some cases answers were obtained by way of personal interviews.

Data were gathered from a total of 86 providers and/or program admin-

istrators. The return rate on mailed questionnaires was about 60%. This

fairly high return rate was undoubtedly due to the fact that the Project

staff was known to many of those receiving the questionnaire. Those respond-

ing were not part of a scientifically drawn sample. Rather, the question-

11

naire was used to gather information from persons known to be providing

D.D.-related services or known to have a professional interest in such services.

my ,23

15...,

24

Characteristics of Providers

Of the 86 providers offering information and opinions on mental

retardation services and needs, slightly more than one-half were women.

Most were married. Ages ranged from 23 to 65. Their mean age was 39.

About one-half held advanced degrees, mostly at the master's level. Eleven

had doctorates and four had less than a college education. Their positions

or relationship to retardation services are summarized below.

Special Education Teachers and/or Special Ed. Administrators 18

County Social Workers and/or Public Social Service Administrators 13

County Public Health Nurses 11

County School Superintendents or School Administrators 8

Nursing Home Operators 7

Psychologists (Mental Health Center and Private Practice) 5

School PsychologistsPhysicians (Public Health and Private .Practice) 3

Social Security Workers and Administrators '3

Vocational Rehabilitation Counselors or Administrators 3

Speech Pathologists 2

Psychiatric Social Workers (Mental Health Center and Private Practice) 2

Group Home Supervisors 2

Sheltered Workshop or Work Activity Administrators 2

Physical Therapist 1

Other Program Administrators or Providers 3

86

As might be expected, most of the providers were from the more populated

counties. The number of respondents from each of the seven counties was as

follows: Missoula, 38; Flathead, 17; Lincoln, 12; Lake, 8; Ravalli, 6;

Sanders, 4 and Mineral, 1.

Service Coordination and Integration

The providers were asked several questions which focused on the coordi-

nation and integration of D.D.Trelated programs and services. More specifi-

cally, they were asked if problems existed in this area and if so, how

31

25

better coordination and integration could be achieved.

Sixty-five providers answered these questions. Of these, 52 --a

majority-- thought that there was a problem. Only seven did not believe

that a problem existed and eight were unsure. It is interesting to note

that four of the seven who reported no problem were from the smallera

counties. One respondent explained her answer by saying that a lack of

coordination was not a problem in her county because, unfortunately, there

were no services to be coordinated.

A variety of suggestions were offered as a means of increasing coordi-

nation and integration. One, however, was mentioned more than any other.

Forty respondents suggested that a single agency should be responsible for

case managements and follow along services. This suggested solution is

consistent with the often repeated 1962 President's Panel on Mental

Retardation recommendation that:

...services be so organized as to provide a central or fixed pointfor the guidance, assistance, and protection of retarded personsif and when needed, and to assure a sufficient array or continuumof services to meet different types of needs. (pp. 14-15)

Nineteen providers suggested the creation of an inter-agency coordinat-

ing council or a similar mechanism which would bring agency representatives

and workers together for the purpose of increasing communication and coordi-

nation. Such a council would meet on a regular basis to discuss common

problems, share plans and keep abreast of changes in agency programs.

Five believed that an information and referral service was needed. It

would serve to guide the retarded and/or their parents to the proper program.

In some respects this suggestion is similar to the one advocating a single

agency responsible for follow along and case management.

EI 32

26

Other suggestions mentioned the need for technical assistance and

consultation to new and developing programs and the need for role clarifi-

cation among agency workers. Apparently these suggestions reflect the

belief that well deligned programs and a clarity of agency purpose facili-

tates coordination and integration.

Prevention of Institutionalization

The providers were asked to identify the three types of service which

would be of greatest value in preventing the institutional placement of

mentally retarded persons. The 12 services identified most often were as

follows.

ServiceNo. of timesidentified

1) Sheltered Living Arrangements(Foster Homes, Group Homes, etc.) 41

2) Training and Education for Retarded 37

3) Sheltered Employmeht (Workshops, WorkActivity, Regular Jobs, etc.) 32

4) Counseling for Retarded and/or Parents 24

5) Respite Care 146) Evaluation and Diagnosis 12

7) Treatment Services (Medical, Dental, BehaviorModification, Speech Therapy, etc.) 11

8) 24-hour Supervisory Care (Skilled Nursing' Hoine,

Residential Care, etc.) 10

9) Follow Along Service 8

10) Day Care 8

11) Transportation 8

12) Information and Referral 7

In addition to the services listed above, financial assistance, recreation,

personal care services and protective services were also mentioned. Sheltered

t 33

27

living rrangements , training and education and sheltered employment we re

viewed as key services. It is noteworthy that transportation was seen as

a greater need in the sparsely populated counties than in those which

contained larger cities. One county social worker underscored the impact

of distance on the delivery of service by-citing the fact that her county

had one-half the land area of Massachusetts.

Depopulation of Institution

Another question asked the providers to idehtify the three types of

service which would be of greatest value in returning the institutionalized

retarded to the community. The 12 services identified most often are

presented below.

Service No. of timesidentified

1) Sheltered Living Arrangement 462) Sheltered Employment and Work Activity 363) Training and Education 274) Recreation 195) 24-hr. Supervisory Care 156) Respite Care 117) Counseling 98) Transportation 99) Treatment services 9

10) Follow Along 811) Day Care 8

12) Community Education 7

Other services mentioned included information and referral, financial

assistance, personal care and evaluation. Clearly, sheltered living arrange-

ments, sheltered employment, work activity, training, and education are

rt. 34

28

among the most needed services. It is interesting to note that community

or public education ranked ninth in the above list but was mentioned only

once among the approaches needed to prevent institutionalization. This

may reflect the belief that the formerly institutionalized retarded encounter

more discrimination than those in the community. Also, evaluation and

diagnostic services are apparently viewed as being less important in facili-

tating the return of persons from the institution than in the prevention of

institutionalization.

Community Acceptance of the Deinstitutionalized Persons

Sixty-six of the providers answered a question which asked how most

people in their area would react to the placement of persons from the

Boulder River School and Hospital into their community and neighborhood.

Their responses are shown below.

Placements would be encouraged '7

Placements would be approved but not encouraged 28

Placements would,be tolerated but neither approved nor encouraged..30

Placements would not be tolerated 1

These opinions seem to reflect the belief that persons placed out of Boulder

would receive a rather 'luke warm' reception in the community.

While it is difficult to generalize on the basis of a relatively small

number of non random responses, the data did not point to a relationship

between level of acceptance and community size. In other words, opinions

offered by providers in small communities were similar to those of providers

from the larger communities.

The providers were also asked for their own reaction to the placement

7:: 35

29

of retarded persons from Boulder into their community and neighborhood.

Their views were as follows:

Placements would be encouraged 49

Placements would be approved but not encouraged 14

Placements would be tolerated but neither approved nor encouraged 1

Placements would not be tolerated 0

It is interesting to note that the providers rated themselves as

being more tolerant than other people in their community. In view of the

fact that the providers have more experience with and knowledge of the

retarded, their self assessment is probably accurate. Myths and fears of

the retarded are more likely to exist among persons with little or no

exposure to the retarded.

COUNTY SOCIAL SERVICES

Given Montana's current governmental strqcture, the Department ofNOUNS.,

Institutions and the Department of Social and Rehabilitative Services

(S.R.S.) play key roles in the planning and implementation of institutional

depopulation. The two groups of service providers most directly involved

in the actual placement of persons out of the institution are social service

personnel at BRS&H and S.R.S. social service staff at the county level.

County social workers carry much of the responsibility for making place-

ments (e.g., foster homes, nursing homes, etc.).

In an attempt to better understand some of the practical issues in

placement, Project staff interviewed nine county social workers in January,

1975. Two were from Missoula County and two were from Flathead County.

One social worker was interviewed from each of the other five counties in

the Region.

11.) 36

30

Number of Clients Served

The results of the survey indicated that during December, 1974, 260

developmentally disabled (D.D.) clients were receiving services from the

seven county departments of public welfare in Western Montana. Of the

260, 33 were under the age of 18 and 227 were over the age of 18. Living

arrangements for these two age groups is shown below.

AgeGroup

LIVING ARRANGEMENT

Foster Parent's Group Independent Intermediate Skilled Other TotalHome or

Relative'sHome

Home Living Care

ArrangementNursingCare

UnderAge 18 10 19 0 0 0 2 2 33

18 and 6 75 18 20 62 42 4 227

Over

TOTAL. 16 94 18 20 62 44 6 260

Persons not Receiving Public Social Services

The social workers were asked if they knew of other developmentally

disabled persons in their county who for one reason or another (eligibility,

having not requested service, etc.) were not receiving service from the

County Department of Welfare. A total of 208, both adults and children, ,mre

known to these nine workers.

L' 37

C.,

31

Caseload and Workload

It is difficult to accurately assess or describe social service case-

loads or work loads in public welfare agencies. Simply counting the number

of persons or families' served per month is deceptive in that such a.count

does not describe the amount of time actually invested in the provision

of service. Moreover there is no such thing as an "average client."

Different clients require different types or different combinations of

services. The provision of some services or dealing with a crisis situation

may absorb many hours of the social worker's time. Other equally important

services may demand little time.

Only two of the nine workers devoted full time to a caseload of

developmentally disabled (D.D.) clients. All others had child welfare,

Aid to Families with Dependent Children, and other social service respon-

sibilities in addition to their D.D. related service activity.

The interviews revealed that 16 county social workers had D.D. clients

in their caseload. Eleven devoted less than one-fourth time to D.D. related

services and one worked one-fourth time on D.D. cases. Two dqvoted one-half

time and two workers in Missoula County devoted full time to a D.D. caseload.

The total time available to D.D. clients added up to a 'full time equivalent'

(FTE) of 4.3. In other words, the total amount of worker time devoted to

D.D. clients was equivalent to a little over four full-time social workers.

Using a FTE of 4.3 and total regional D.D. caseload of 260 clients, the

average D.D. caseload for December, 1974, was calculated to be 59.8.

As previously indicated, only two of the 16 workers having D.D. service-

related responsibilities had completely D.D. client caseloads. All others

38

32

had additional responsibilities for non-D.D. clients. Total caseloads

(all clients) for these workers ranged from 50 to 115, the average being

about 77.

Needed Training

.Five workeit voiced a need for greater knowledge and skill in the area

of community organization and planning (i.e., program development, organ-

izing support for programs, planning, etc.). An equal number wanted addi-

tional training in counseling and casework with the D.D. client and his/

her family. Two expressed a need to know more about epilepsy, cerebral

palsy and autism (i.e., the other D.D. conditions). One wanted a better

knowledge of legal issues related to the D.D. client; one wanted a better

understanding of the current D.D. programs and policy. One worker com-

plained that she simply didn't have time to leave the county for additional

training.

Concerns Expressed by the Workers

Five of the nine workers expressed concern over the fact that D.D. per-

sons were not accepted in communities. They thought some type of "community

education" was needed in order to increase the level of acceptance. Four

workers expressed frustration over the lack of resources for the D.D. client.

In many cases, inappropriate resources (e.g., nursing homes) were being

utilized simply because appropriate ones were not available. Three men-

tioned that problems have occurred when D.D. clients and geriatric persons

were mixed in nursing homes. This 'mixing' has been criticized by physicians

39

33

and relatives of the aged nursing home residents.

Four workers felt additional staff was needed so that mca time could

be devoted to D.D. clients. Two expressed the belief that workers should

specialize in work with the D.D. rather than having to handle all types

of cases (e.g., AFDC, Child Welfare, etc.). One complained of professional

isolation (i.e., lack of peer support and consultation). Two complained

about difficulty in securing authorization to travel outside of their own

county.

Three mentioned problems in finding foster homes. These problems

were interrelated with the low level of foster home payments and licensing

requirements. Two workers expressed uncertainty or confusion related to

the D.D. person's legal rights in protective services (trusteeship,

guardianship).

Several of the workers expressed a need for a more highly coordinated

effort between the Department of Institutions and S.R.S. with regard to

release and placement procedures and follow along services.

Placement and Follow Along

At the time of this writing the procedures relating to the placement

of BRSUI residents into community programs leave something to be desired.

The rather complex transfer of placement and case management responsibility

from BRSUI to the S.R.S. Community Services Division and then to social

service personnel at the county level can hamper the continuation of client

programming begun at BRSUI and result in an inadequate exchange of infor-

mation needed for proper placement and follow along activities.

tu 40

34

to the greatest extent possible, channels and procedures for communi-

cation between BRSUI social service personnel and SRS county social service

staff must be simplified and streamlined so as to facilitate the direct

and rapid exchange of relevant client information.

Persons who have spent many years in BRSfIII frequently develop patterns

of behavior which are 'functional' within an institutional setting but

inappropriate in the community. To a great extent, successful functioning

in a community is contingent upon the elimination of the maladaptive

behavior learned in the institution.

Those responsible for providing follow along services should have a

good understanding of the developmentally disabled, D.D. services and the

modification of maladaptive behavior.

Proper placement depends upon the availability of detailed knowledge

of the individual's service needs, wants and behavior. Proper client

programming and follow along requires frequent contact with the individual

coupled with an ability to assess his progress and initiate needed

modification.

UNMET SERVICE NEEDS

A 1975 survey conducted by personnel of the Montana Social and Rehab-

ilitative Services Developmental Disabilities Bureau indicated that a

great many persons with mental retardation and other developmental disabili-

ties have unmet service needs. The survey data were gathered from inter-

views with personnel working within the Western Montana Child Development

Center, the Bureau of Indian Affairs and various service programs under the

41

35

auspices of public health, public welfare and public schools systems. The

following table presents the number of noninstitutionalized developmentally

disabled individuals, both children and adults, needing specific types of

residential services in seven Western Montana counties. Not included in

this count were those persons already receiving appropriate services.

RESIDENTIAL SERVICES NEEDED

Group Home Foster Home Group Home orFoster Home

Skilled NursingCare

TreatmentCenter

Flathead 58 7 0 7 10Lake 50 3 10 0 25Lincoln 15 4 0 1 10Nlineral 1 0 0 0 0Missoula 18 /7 10 5 20Ravalli 10 0 0 0 10Sanders 40 7 0 0 10

Total 192 28 20 13 85

The table shown below presents the number of noninstitutional,

developmentally disabled Western Montana citizens, both adults and children,

known to need selected supportive services. Because many individuals need

more than one such service, this is not an unduplicated count. Each entry

can be viewed as units of service needed.

see chart on the following page

FLI 42

36

SUPPORTIVE SERVICES NEEDED

Occupational Day Sheltered Recrea- Transpor- Respite Otherand/or Care Employment tion tation Care Services

PhysicalTherapy

Flathead 39 48 80 81 76 23 14Lake 30 10 70 150 150 20 95Lincoln 15 15 40 40 35 15 14Mineral 4 1 -- 4 4 1 19Missoula 43 45 48 103 75 46Ravalli 10 20 25 19 20 30Sanders 30 40 40 70 30 15

UNMET EDUCATIONAL NEEDS

According to data gathered by the Regional Services Plan for the

Handicapped, approximately 447 school age mentally retarded youth partici-

pated in special education programs provided by Western Montana school

districts during 1975. Of these, 373 were in EMR programs and 74 were

in TMR programs.

Clearly, a great many other mentally retarded youth are in need of

special education services but not receiving them. A 1974 survey indicated

that approximately 585 students enrolled in Western Montana schools were

retarded but not receiving needed educational services. Not included in

this count were retarded children of preschool age and those who had 'dropped

out' and no longer enrolled in school. On the basis of these data alone,

it would appear that a three or four-fold increase in special education

services is needed.

43

37

PREVALENCE OF MENTAL RETARDATION

Those involved in the planning of a comprehensive system must

necessarily attempt to estimate the number of retarded citizens who are

potential users of community based services. This raises the issue

of prevalence.

It is commonly assumed that approximately three percent of the general

population is mentally retarded. The National Association of Retarded

Citizens (NARC) and the President's Committee on Mental Retardation (PCMR)

are but two of the many organizations which base their program and service

recommendations on the three percent prevalence rate. However, not everyone

accepts the three percent figure. Mercer (1973) for example, has argued

that the three percent rate is based on faulty statistical and definitional

assumptions and does not conform to empirical data. She believes the

prevalence rate is closer to one percent. Edgerton, Eymon and Silverstein

(1975) observe that:

It may be correct to state that three percent of the childrenborn will be diagnosed as retarded at some time during theirlives. But this is not true on any given date; the correctfigure is closer to one percent. This is so because peoplewho were diagnosed as mildly retarded during childhood oradolescence appear to be quite normal as adults. Similarly,it is often difficult to identify mildly retarded preschoolchildren because their behavior is often like that of otherchildren. Mental retardation should not be considered anunchanging or a permanent condition. (p. 63)

While the debate on prevalence continues, one can only conclude that

the prevalence of mental retardation is somewhere between one and three

percent of the general population. If we apply these prevalence rates to

the state of Montana which had a 1970 population of 694,409 we find that

a,

71 44

38

between 6,944 (1%) and 20,832 (3%) Montana citizens were mentally retarded.

A two percent rate yields an estimate of 13,889. When these same rates

are applied to Montana's 1974 estimated population of 735,000, we find that

the probable number of retarded individuals is between 7,350 (1%) and 22,050

(3%). The two percent rate (2%) yields an estimate of 14,700.

In the table below, the 1%, 2% and 3% rates have been applied to the

1974 estimated populations of seven Western Montana counties.

County., population estimate 1% prevalence 2% prevalence 3% prevalence

Flathead 42,600 426 857 1,278

Lake 16,700 167 334 501

Lincoln 17,000 170 340 510

Mineral 3,600 36 72 108

Missoula 63,700 637 1,274 1,911

Ravalli 17,900 179 358 537

Sanders 7,800 78 156 234

TOTAL 169,300 1,693 3,391 5,079

For the purpose of this study, projections will he based on the 2%

prevalence rate. Within a mentally retarded population (i.e., all persons

considered to be mentally retarded) it is commonly estimated that 89% are

mildly retarded, 6% are moderately retarded, 3.5% are severely retarded and

1.5% are profoundly retarded. When these percentages are applied to the

Montana's 1974 estimated mentally retarded population of 14,700 (2%) further

estimates by level of retardation are possible.

Mildly retarded13,083

Moderately retarded882

Severely retarded515

Profoundly retarded220

TOTAL RETARDED POPULATION (MONTANA) 14,700

39

Below, the same procedure has been applied to the 1974 estimated

retarded population in Region V counties.

County Mentally RetardedPopulation, allages (2% estimate)

LEVEL OF RETARDATION

mild:

(89%)

moderate(6%)

severe

(3.5%)

profound(1.5%)

Flathead 857 762 51 30 13

Lake 334 297 20 12 5

Lincoln 340 303 20 12 5

Mineral 72 .64 4 3 1

Missoula 1,274 1,134 76 45 19

Ravalli 358 319 21 13 5

Sanders 156 139 9 6 2

TOTAL* 3t391 3,018 201 121 50

*Because calculations were rounded off to the nearest whole number, slight

variation in totals are to be noted.

OOP

46

CHARACTERISTICS OF THE STUDY POPULATION:

YOUTH AND THEIR PARENTS

In order to gather information which would provide an overview of

problems and issues related to deinstitutionalization and the development

of community based services in Western Montana, four groups of retarded

youths and their parents or parental surrogates were studied. Group I

consisted of fifteen BRWI residents; Group II included the thirteen youths

who had been placed out of BRSUI (i.e., former BRSETH residents); Group III

consisted of eight youths who had been evaluated at BRM but not admitted

to the institution; and Group IV was made up of 25 retarded youths who had

never utilized any BRSUI services. Altogether 61 youths and their parents

made up the basic study population.

CHARACTERISTICS OF YOUTH

Level of Retardation

As might be expected, the youths who were severely and profoundly

retarded were those most likely to be institutionalized. Those who are

retarded to a lesser degree can usually remain in the community. The

levels of retardation for the 61 youths in the study population are shown

below. It is noteworthy that 11 of the 15 BRSW residents (Group I)

were either severely or profoundly retarded whereas none of those in

Group IV (those who had never utilized BRSUI services) were retarded to

this degree.

47

40

41

GROUP I(BRW)

GROUP II(P.O.)

GROUP III(EVAL)

GROUP IV(NEV)

TOTAL

MILD 3 1 3 10 17MODERATE 1 3 1 10 15SEVERE 2 4 1 5 12PROFOUND 9 5 2 0 16UNKNOWN 0 0 1 0 1

TOTAL 15 13 8 25 61

The mean age of the 61 youths was 15.4. The youngest was lh and two

were age 5. All others were over eight years of age. A total of 21 were

legally adults, i.e., over age 18.

The mean age for groups I, II and IV were 15.8, 16.4 and 15.7

respectively. Youths in Group III, those who had been evaluated at BRW,

were somewhat younger. Mean age for this group was 11.8 years.

Sex

Of the 61 youths, 35 were males and 26 were females. This distribution

reflects the common research finding that males are more likely to be

classified as being mentally retarded and more likely to be institutionalized.

Seizures

Twenty-one of the 61 were subject to seizures. Many of the seizure

patterns were controlled by medication. The 21 persons having seizures

were fairly equally distributed across the four groups. However, data

48

42

available to the researchers indicated that those with very severe,

frequent and uncontrolled seizures were more common to those who had

been institutionalized (Groups I and II).

Cerebral Palsy

A total of eight youths in the study population had cerebral palsy in

addition to being mentally retarded. Six of these were in Group IV, those

who had never utilized BRSUI services. Among the eight youths, no relation-

ship existed between the presence of cerebral palsy and severity of mental

retardation.

Hearing and Sight

Eleven youths in the study population had hearing problems. Two were

totally deaf and two others had very. limited hearing. Three youths were'

totally blind and two others had only limited sight. A total of 21 had

significant sight problems. Three individuals were both deaf and blind.

As might be expected most of those with severe hearing and sight problems

were in Griup I and II, i.e., BRSUI residents or former residents who had

been placed intL nursing homes.

Speech Problems

Forty-seven of the 61 youths did not have speech which could be easily

understood. Eighteen of these could only make sounds and one was incapable

of making sounds. Twenty-two had speech which was 'somewhat difficult' to

understand and six had speech which could be termed 'very difficult' to

49

43

understand. Ten of the 15 BMW residents had rather severe speech problems.

As might be expected, persons in Groups I and II, those who had been

institutionalized, tended to be among those with the most severe speech

problems.

The available data indicated that a significant number of the youths

needed speech therapy or assistance in language development. Of the 61

youths studied, 17 needed speech services but were not receiving them.

Ten of these 17 were BRSUI residents.

Most of the Group IV youths needing speech services were obtaining

some assistance through special education programs. Twelve of the 25

youths in this group were making use of speech programs. However, two

others needing the service had not obtained it.

Mobility

Forty-six of the 61 youths could walk without assistance. Over one-

half of these were in Group IV. However, only 10 of the 15 BRSUI residents

could walk without assistance.

A total of 15 had mobility problems. Five were completely non

ambulatory. Of the 25 retarded youths in Group I, those who had never

utilized BRSUI services, only two had mobility problems.

Toilet Training

Thirty-eight of the 61 youths were completely toilet trained and never

had toilet accidents. All others were incompletely toilet trained. A

total of ten youths were not toilet trained at all. Three of these were

BRSW residents, two were in nursing homes and five lived with their parents.

50

44

Multiple Handicaps

Twenty-two of the 61 could be described as having multiple handicaps,

i.e., having at least one significant handicap in addition to being mentally

retarded. One BRSW resident, for example, was mentally retarded, non

ambulatory, blind, deaf and non verbal. Another was retarded, blind, non

verbal and experienced severe seizures. Only three of the 15 BRSW residents

studied did not have a significant handicap in addition to mental retarda-

tion, usually at the severe or profound level.

Six of the 13 in Group II (former BRS&H residents) and three of eight

in Group III had multiple handicaps. It is significant to note that only

two of the 25 in Group IV (those who had never utilized BRSW services) had

multiple handicaps. Clearly, the utilization of BRSW is associated with

the existance of multiple handicaps in addition to severe and profound

levels of retardation. Needless to say, institutional depopulation and the

_ prevention of institutionalization depends upon the existance of community

based programs which can serve the multiply handicapped mentally retarded

person.

CHARACTERISTICS OF THE PARENTS

The indepth interviews with parents usually lasted from one and one-

half to five hours. One lasted nearly eight hours. Twenty -seven were

joint interviews, i.e., with both parents. Nineteen were with the mother

only and three were with the father only. Thirteen combined the use of

the telephone and the mail as a means of covering all areas of the interview

schedule.

51

45

Age and Ethnicity

At the time of the interviews, most of the parents were in their

40's. The oldest parent interviewed was a father, age 70. The youngest

was a mother 25 years old. The average age for the mothers and fathers

in each of the four groups is presented below.

MEAN AGE OF PARENTS

GROUP I GROUP II GROUP 'III GROUP IV

Mothers 42.9 44.6 38.4 44.2

Fathers 42.5 50.3 42.1 48.2

Only five of the parents in the 61 families were members of an ethnic

minority. Four were Chicano and one was Native American. Even though the

Flathead Indian Reservation is part of Region V only two Native American

retarded youths fell within the bounds of the study population.

Marital Status and Family Size

Of the 61 families studied the vast majority were married. One was

a widow, four were divorced and two were separated.

The four groups did not differ significantly in family size. Family

size did not appear to be related to whether or not a retarded family

member was placed in the BRSUI. Only two of the families were single child

families and five were two child families. Sixteen had three children,

sixteen had four and thirteen had five children. Nine families had six or

more children.

46

Educational Level and Occupation

Most of the mothers and fathers had completed high school. The

parents' educational level was not related to the institutionalization or

a family member. Of the 54 fathers on whom data were obtained, 12 had a

grade school education, five had some highschool and 20 had not gone beyond

high school. Eight had some college and nine had graduated from college.

Of the 60 mothers on whom educational data were obtained, four had some

grade school, ten had some high school, 25 had not gone beyond high school,

four had completed a three year nursing program, 11 had some college and

six were college graduates. Occupational data were obtained on 56 of the

61 fathers. A classification of their occupations appears below.

Professional, Technical and Kindred Workers 8

Managers, Officials and Proprietors 7

Farm or Ranch Owners or Managers 8

Clerical and Kindred Workers 1

Craftsmen, Foremen and Kindred Workers 9

Operatives, (e.g., Mechanics, Sawyers, Truck Drivers) 10

Unskilled Service and Labor 9

Retired- 2

Disabled Workers 2

56

A majority (41) of the mothers were full time housewives. Others

were involved in teaching, nursing, clerical work, and waitress work.

Ten mothers combined full or part time employment with the role of housewife.

County of Residence

Of the parents interviewed IS were from Missoula County, 13 were

frol, Flathead County, four were from Lincoln County, eight were from Lake

County, 10 were from Ravalli County, four were from Sanders County, and

53

47

two were from Mineral County. Four of the parents interviewed were living

in other counties but were included in the study population because they

had recently moved from the Western Montana region.

4; 54

FINDINGS DERIVED FROM PARENT INTERVIEWS

AND OTHER SOURCES OF CLIENT/FAMILY DATA

Included in this section are findings and observations derived from

the indepth interviews with parents of 61 retarded youths and from data

gathered from BRS&H staff. This data, plus that presented in previous

sections, provide the basis for the recommendations presented in the

final section of this report.

LIVING ARRANGEMENTS

The 61 retarded youths in the study population were in several differ-

ent types of living arrangements. Fifteen, of course, were residing at

the BRSUI. Living arrangements for the four, research categories are shown

below.

LIVING ARRANGEMENT

Group I(BRS&H)

RESEARCH CATEGORY

Group II Group III(P.O.) (EVAL)

Group IV(NEV)

Total

BRSUI 15 0 0 0 '15Parents' Home' 0 5 6 23 34Foster Home 0 3 0 1 4Nursing Home 0 4 0 0 4Group Home 0 0 1 0 1Another Institution(out of state)

0 1 0 0 1

Semi-independent 0 0 1 1 2

Total 15 13 g 25 61

Slightly more than one-half of the 61 were living with parents. It is

also noteworthy that of the 13 who were placed out of BRSUI (Group II),

78' 55

49

five returned to their parents' homes while eight went into other settings.

Assuming these data are representative it would appear that only a

minority of youths placed out of BRSUI would be able to return to their

parents' homes. Deinstitutionalization, therefore, is contingent upon

the development of alternate living arrangements.

PARENT'S SATISFACTION WITH CHILD'S LIVING ARRANGEMENT

All of the parents were asked how satisfied they were with their

child's current living arrangements. Below are their responses.

GROUP I(BRS&H)

GROUP II(P.O.)

GROUP III(EVAL)

GROUP IV(NEV)

Total

Very Satisfied 4 1 5 19 29Satisfied 6 S 1 5 17Dissatisfied 4 2 1 1 8Very Dissatisfied 1 4 1 0 6No Opinion 0 1 0 0 1

Total 15 13 8 25 61

The greatest amount of dissatisfaction was expressed by parents in Group II,

i.e., those whose children had been placed out of BRS&H.

PARENT'S PREFERRED LIVING ARRANGEMENT

Forty-two of the parents did not want a change in their child's living

arrangement whereas 19 wanted a change. The living arrangements preferred

by these 19 parents are shown below.

see chart on the following page

gir 56

50

PREFERRED GROUP I GROUP II GROUP III GROUP IV TotalLIVING ARRANGEMENT (BRSTIII) (P.O.) (EVAL) (NEV)

Group Home 2 2 1 2 7Foster Home 1 0 0 0 1Nursing Home 2 1 0 0 3BRSTilI 0 1 0 0 1Institution (not BRS&H) 2 0 1 0 3Treatment Center 0 1 0 0 1Not Sure 1 2 0 0 3

Total 8 7 2 2 19

Fifteen of the 19 parents wanting a change for their child were from

Group I and Group II, those whose child was at or was previously at BRSE,H.

It is important to note that none of the 19 wanting a change wanted their

child returned to their home.

Several parents indicated that they would like a change in their child's

living arrangement but would support a change only if they were assured

that the change would result in better care for their child. A number of

parents expressed doubt over the ability of community based services to

properly care for their child.

COMPNUSON OF BRS&I I PROJECTED LIVING ARRANGEMENT ANDPARENT'S PREFERRED LIVING ARRANGEMENT

Fifteen youths in the study population were residing at BRSUI

(Group I). After an assessment of these individuals, 8RS&H staff formulated

a 'projected living arrangement' for each, i.e., the most suitable arrange-

ment for the individual if he/she were to leave the institution. When these

projections were compared to the parents' preferred living arrangement, it

5,7

51

was found that the two agreed in only four of the fifteen cases.

In seven cases, the parents did not want their child to leave the

institution. For these seven individuals, BRSW staff recommended a foster

hoMe for five, a group home for one and a treatment center for the seventh.

Eight parents stated that they would like their child out of BRSW. In

four cases, BRSW staff and parents agreed on the preferred living arrange-

ment. In two cases, parents wanted their child in a skilled nursing home

while BRSW staff preferred foster home placements. In two cases, parents

wanted their child in another institution (not BRSW) while BRSW staff

preferred to see one of these youth in a treatment center and the other in

a foster home.

PARENT'S VIEWS OF PLACEMENT OUT OF BRSW

Group I and Group II parents were asked their views on the placement

of their child out of the BRSW. Of the 15 who had children in BRSW,

seven were 'very favorable,' three were 'favorable,' and five were 'opposed.'

Many of those who felt favorably disposed to the idea of their child leaving

the institution qualified their answer by saying that they would favor the

move if they knew that the community based programs were stable and had more

to offer than the institution. Of the thirteen whose children had already

been placed out of BRSW, eight felt 'very favorable,' one was 'favorable,'

one was 'opposed,' two were 'very opposed' and one offered no opinion.

PARENT SATISFACTION win BRsui

The parents of the 28 youths who either resided at BRSW or had been

placed out of the institution were asked how satisfied they were with the

4J 58

52

care, treatment and training their child had received. Their responses

were as follows.

GROUP I

(BRSfill)

GROUP II

(P.O.)Total

Very Satisfied 4 1 5Satisfied 6 5 11Dissatisfied 4 2 6Very Dissatisfied 1 4 5No Opinion 0 1 1

Total 13 15 28

A fairly common complaint expressed by these two groups of parents was that

they lacked sufficient and continuous contact with the BRSFIll staff. The

high rate of staff turnover at the institution made it difficult for some

of the parents to maintain a relationship with staff who could explain

what was happening to their child. Because of the publicity BRSEM has

received, many feared that their child would be physically or sexually

abused by other residents. Some Grcup II parents complained that they wArc

not involved in [Ile decision to place their child out of the institution.

REASONS FOR INSTITUTIONAL PLACEMENT

The parents identified a number of reasons for their decision to

institutionalized their retarded child. As might be expected, most gave

more than one reason. Reasons for placement are presented on the following

page.

59

53

REASONS FOR PLACEMENT NUMBER OF TIMESMENTIONED

Professionals encouraged placement 23Strain on the family 19Child needed services that were not availablein the community 17

Strain on other children in the family 16Could no longer cope with the problem 13Child needed round-the-clock medical care 9Child suffered rejection in the community 7

Strain on the marriage 7

Financial problems 6

Services available in the communitywere of poor quality 3

CHILD'S AGE AT INSTITUTIONAL PLACEMENT

Twenty-eight of the 61 retarded persons in the study population had

been institutionalized (i.e., those in Groups I and II). Age of first

placement is shown below.

AGE OF FIRST PLACEMENT NUMBER OF R8TARDED PERSONSINSTITUTIONALIZED

Shortly After Birth 3

Age lh to 3 Years 8

Age 4 to 6 Years 4

Age 7 to 9 Years 5

Age 10 to 13 Years 5

Age 14 to 16 Years 3

Total 28

60

54

Since institutionalization is essentially a family decision, the age

of placement is a crude barometer of family stress and frustration. It is

important to note that over one-half of these placements occurred prior to

age six and most of these were strongly encouraged by professionals. In

the past, few services have been available to this age group. Early inter-

vention and preschool services hold promise as a deterrant to institution-

alization.

PARENT'S AGE AT PLACEMENT

Most of the 26 Groups I and II parents were in their mid or late

30's at the time they placed their child at BRS&H. The mother's age

at the time of placement ranged from 22 to 46 years with a mean age

of 34. The father's age at the time of placement ranged from 24 to

58 years with a mean age of 38.2.

REASONS FOR NOT INSTITUTIONALIZING THE CHILD

Of the study population, 33 had not been institutionalized. Several

questions were directed toward the parents in an attempt to identify when

the parents considered placement most seriously and why they decided not

to institutionalize their retarded child.

Twenty-three of the parents explained that they never seriously consi-

dered placement. Ten reported that they had thought very seriously about

institutional placement and for five of these it was when their child was

between five and nine years of age. While these data are limited, they

may point to a period when families are forced to grapple with the placement

!,

.

55

decision. For several families this was a period of time when they

discovered that their school system had little to offer their child or

would not accept him at all. Montana's new mandatory education law will,

hopefully, eliminate this problem.

Mbst of the 33 parents who did not institutionalize their child

expressed what can be best described as a "moral commitment" to the care of

their retarded child at home. In other words, they rather stoically

concluded that they had an obligation to keep their child at home. To

place their child would be for them a betrayal of this commitment and

parental obligation. It is interesting that many of the parents who

opposed institutional placement involved themselves in the development and

promotion of programs in their home communities.

PARENT'S VIEWS ON PREVENTION OF INSTITUTIONALIZATION

Group I and Group II parents, those who had institutionalized their

child, were asked what community services--had they existed--might have

helped them avoid placement. Seven of the 15 in Group I were certain that

institutionalization was unavoidable. In other words, they could not

conceive of community services which could have helped them to avoid

placement. Many of these parents were unfamiliar with existing services or

ones which had developed since their placement decision. The other eight

Group I parents identified several services which might have helped prevent

placement. Among these were community treatment for severe epilepsy, day

care, more adequate medical care, special training for the deaf retarded,

assistance with behavioral problems and skilled nursing care.

,e()ft,'

56

The children of Group II parents had all been placed out of the BRS&H.

As compared to the Group I parents, these parents named more services which

could have helped them avoid placement. Apparently, they were better

informed about alternatives to institutional care. Special education and

training in self help skills were mentioned most often. Others said they

had needed counseling, financial assistance to pay medical bills, respite

care, homemaker service, day care and arrangements for emergency medical

care. One would have needed a special community program for the deaf-blind

retarded.

OPINIONS ON CLOSING BRS&H

When asked their opinion on the closing of the BRSW, most parents

expressed opposition to such a possibility. Their opinions are shown below.

GROUP I(BRS&H)

GROUP II(P.O.)

GROUP III(EVAL)

GROUP IV(NEV)

Total

Strongly Favor Closing 4 2 2 5 13

Favor Closing 0 0 0 3 3

Opposed to Closing 5 2 3 7 17

Strongly Opposed to Closing 6 9 3 9 27

No Opinion 0 0 0 1 1

Total 15 13 8 25 61

Many Group I parents opposed the phasing out of institutional care

because they could not conceive of any other facility or program being

capable of caring for their child. The existence of an institutional

6 3

57

facility apparently provides a sense of security to many parents, even

those who have never placed their child and who hope to avoid institution-

alization. Interviews with parents.of institutionalized youths indicated

that many were uninforthed about the recent development of community based

programs. Parents are likely to oppose the closure of BRSUI until stable

and workable alternatives to institutional care exist in the community.

LACK OF SERVICES IN THE COMMUNITY

Many parents complained about the-lack of services in their home

communities. This was especially true of parents living in or near smaller

towns. Perhaps the most dramatic expression of this frustration is the

decision to move to another community in order to secure services. Eight

of the families in the study had moved in order to obtain needed services.

In some cases the move meant moving farther away from relatives and friends

and giving up satisfactory employment.

As shown below, 24 of the 61 parents interviewed, reported that they

had traveled out of state in order to secure services foi their retarded

child.

GROUP I

(BRS&H)

GROUP II

(P.O.)

GROUP III(EVAL)

GROUP IV(NEV)

TOTAL

TraveledOut of State 4 6 3 11 24

Never TraveledOut of State 11 7 5 14 37

Total 16 13 8 25 61

64,

58

In most cases, these parents had traveled to Seattle, Spokane or Salt

Lake City and sought diagnostic services. Of interest is'the fact that

11 of 25 Group IV parents, those who had never utilized BRSU1 services,

had traveled out of Montana.

There is no one explanation for the tendency to go out of state for

diagnostic services. In some cases parents were referred by their

physician, others sought out a 'second opinion' and others were not aware

of diagnostic services available in the region.

TRANSPORTATION

Twenty-two parents expressed the belief that some type of transportation

service was needed for the mentally retarded. Thirty-four did not see a

need for this service. Five did not have an opinion on this matter.

Six stated that a lack of transportation was a "very large problem."

As would be expected those who were most concerned about transportation

were parents in Groups III and IV, or those whose retarded children were

still living at home. Nine parents who provided transportation for their

child, usually to and from school, drove an average of 170 miles per week.

Two parents drive 300 miles per week or 60 miles per day in order to secure

educational services.

None of the communities in Western Montana have public transportation

services. Aside from private transportation, only taxi service was available

to non school age persons. However, some of the larger service programs in

the region have mini buses. In a couple of communities a subsidized taxi

program has been established by the State D.D. Bureau. School buses are

available to many but not all mentally retarded school age children.

65

59

FINANCIAL STRAIN

All of the parents interviewed were asked if securing services for

their retarded child had created financial strain. A breakdown or their

answers is presented below.

DEGREE OF GROUP I GROUP II GROUP III GROUP IV Total

FINANCIAL STRAIN (BRW) (P.O.) (EVAL) (NEV)

Great Strain 4 1 2 4 11

Some Strain S 4 3 9 21

Little Strain 1 2 1 4 8

No Strain 5 5 2 8 20

No Opinion 0 1 0 0 1

Total 15 13 8 25 61

As can be seen a total of 11 experienced "great financial strain" and

21 experienced "some financial strain." Seventeen of the 61 parents report-

ed that a lack of adequate income had prevented them from securing needed

services for their retarded child. The others did not feel that a lack of

money was a factor in keeping their child from needed services.

It was noted that many parents showed a reluctance to utilize what

they termed "welfare programs." While they did not hesitate to utilize

public school or public recreational programs, a 'stigma' was attached to

public assistance and public social service programs. The use of a means

test or financial eligibility criteria in the latter programs discouraged

their utilization.

It,

60

SATISFACHON WITH EXISTING COMMUNITY SERVICES

A rather surprising finding was the fairly high level of satisfaction

parents expressed for the few community programs that do exist in the region.

In many cases, the parents seemed more satisfied with the programs than the

professionals who operate them. This discrepancy seems related to the

concept of 'relative deprivation.' In other words, the parents seem

satisfied because they did not possess a basis for comparison. Some parents

explained their satisfaction by saying that existing services are "better

than nothing" and they had "nothing" just a few years ago. Parents who

had previously lived in other states or metropolitan areas were more likely

to express dissatisfaction with programs in the region than those who had

never lived out of the region.

Some parents expressed concern over the quality of service provided by

community based programs. It would appear that some parents will resist

deinstitutionalization until they are convinced that community programs

provide service that is equal to or better than that available in insti-

tutions. In view of the fact that some deinstitutionalization efforts

(e.g., the overuse of nursing homes) have been minor disasters, their

concerns are understandable. The existence of stable programs of high

quality will do much to build confidence in community alternatives.

FEARS OVER PROGRAM PERMANENCE

Many parents and some community professionals are opposed to deinsti-

tutionalization because they doubt the stability of community based programs.

They wonder whether the state and federal governments are truly committed

) 67

61

to the ongoing funding of such programs. Many fear that deinstitutionaliza-

tion is a 'fad' and that future budget cut backs might leave them without

either an institution or community based programs. Given the recent history

of other human service programs (e.g., mental health, war on poverty programs,

etc.), this is a legitimate concern.

KNOWLEDGE AND UTILIZATION OF EXISTING SERVICES

All of the parents interviewed were questioned regarding their know-

ledge and utilization of existing services and programs. In relation to a

list of programs parents were asked if they: (1) were now using the service,

(2) had used the service in the past, (3) were aware of the service but had

not used it,or (4) were not aware of the service. Many of the parents had

"heatd of" or were vaguely aware of existing programs but were uninformed

regarding specifics such as eligibility, cost, availability, location or

the exact nature of the services. Because service terminology was often

unfamiliar or confusing to the parents, much interview time was spent explain-

ing the services. Many parents expressed a need for further information on

the services discussed.

Responses provided by the parents are shown below. It should be noted

that in the case of some joint interviews, the two parents gave different

responses. For this reason the number of responses sometimes exceeds 61.

Questions concerning services peculiar to a city were only asked of parents

in that city.

7 68

62

PROGRAM, AGENCY OR TYPE OF SERVICE

0U

0 0*EU Uri ri 4-) a)

Aco

c53 c% a) 4-.) tn.r.1U I--I g

.,-1

ti 144v) .9 33 tu,to

t0Z

7:ta)tA 4-.)

tA

0) 1:14CtS

CiS gt--.1

4-1 4-.)0 0Z0),--4 0)

3 ciS<

a),--4:

<4

Child Development Center (Missoula) 8 28 20 8

Missoula Crippled Children and Adult RehabilitationCenter 1 8 41 11Community Mental Health Center 1 11 36 14Community Coordinated Child Care (4C's) 0 0 17 40

State Social and Rehabilitative Services (SRS) 6 6 36 15State Rehabilitative Services (VocationalRehabilitation) 4 6 46 6

Department of Public Welfare (Social Services andEconomic Assistance) 9 9 41 3

County Department of Health 2 18 35 6

Crippled Children's Division--State Department ofHealth 1 4 35 23

Family Planning/Planned Parenthood 0 0 54 9

Public Schools (Special Education) 31 11 21 0

University of Montana Clinical Psychology Center 0 14 29 21

University of Montana Speech and Hearing Clinic 1 18 32 12Boulder River School and Hospital 17 18 28 1

Eastmont Trdining Center (Glendive) 0 1 28 33

Warm Springs State Hospital 2 20 40 3

State School for Deaf and Blind (Great Falls) 0 1 54 8

Montana Center for Handicapped Children (Billings) 1 6 32 24

Indian Health Service 1 0 38 23

Shodair Crippled Children's Hospital (Helena) 0 3 49 11

Association for Retarded Citizens 18 10 20 16

Western Montana Epilepsy Association 0 0 37 30

Council for Exceptional Children 0 1 17 46

roSn

69

63

0U

,-4

UO 0 U

-r-4

,-4

4-J

a)zaq

cr:

a) a. 0

ci)

ci)

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r-1U -4 g

O 0 *rq

. 1.4

r-1g g 0. 4-1O o ' 0

141:M

CD

^d a)g 1-4

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0 0 ctIn <cjw a)

:::

02 0= .-+

< = 02

Association

for

Children

With

Learning

Disabilities

0 1 14

48

Parents

of

Exceptional

Children

0.

0 22

41

Medicaid

12'

3 38

9

Supplemental

Security

Income

(SSI)

6 1 32

24

Food

Stamps

7 7 46

2

Aid

to

Families

With

Dependent

Children

(economic

assistance)

4 5 39

13

County

General

Assistance

0 4 37

21

Missoula

Area

Ivy

Street

Arts

and

Crafts

0 0 9 36

Opportunity

Foundation

Workshop

0 3 28

14

Mary

Dawson's

Program

0 0 13

32

Arrowhead

Home

(group

home)

0 1 20

24

L'Arche

Group

Home

0 0 16

29

Kalispell

Area

Flathead

Industries

0 1 26

13

Adults

Group

Home

0 0 19

21

Day

Activity

Center

0 0 14

28

Libby

Area

Special

People's

Program

0 0 7 27

Polson-Ronan

Area

Special

Citizens

Center

2 0 11

22

St.

Joseph's

Convalescent

and

Retirement

Center

0 0 17

18

f.

70

64

It is noteworthy that public programs (e.g., public health, public

schools, public welfare, state hospitals, etc.) were among -he best known

programs. As might be expected, special education was the most utilized

service. Of the various parent or self-help organizations listed, the

Association for Retarded Citizens was the best known and most utilized.

CONFUSION OVER SERVICE TERMINOLOGY-

It was observed that most parents and many providers lacked a clear

and uniform terminology. Different terms or service descriptions mean

different things to different people. For example, several programs termed

"sheltered workshops" were, in reality, work activity centers.

INFORMATION AND REFERRAL (I & R)

When asked about the need for an information and referral service,

44 of the 61 sets of parents stated that an I & R service would be of "very

great importance." Eight rated it as being of "great importance," seven

thought it would be of "some importance" and two expressed no opinion. The

value placed on I & R was not apparently related to the research group.

Twelve of the 1S parents whose children were in BRS&H (Group I), for example,

considered I & R to be of "very great importance."

RESPITE CARE

Throughout the region there is part time or respite care

for retarded persons and their families. A lack of respite care often

prevents the parents and other family members from working, responding to

65

emergencies and obtaining periodic relief from the demands of parenting.

A11 of the parents were asked about the need for respite care services

and how important such services would be to families having a retarded

member. These responses are shown below.

TOTAL GROUP I(BRSUI)

GROUP II(P.O.)

GROUP III(EVAL)

GROUP IV(NEV)

Very Great Importance 34 9 8 4 13

Great Importance 6 3 2 1 0

Some Importance 15 2 2 2 9

No Importance 6 1 1 1 3

Total 61 15 13 8 25

It is clear that adequate respite care services would help some fami_ies

to avoid institutional placement. Respite care is possibly one of the least

expensive community based services that can be developed and also one which

is highly effective in reducing strain on families.

TRAINING AND EDUCATION

Of the 61 youths in the study population, only 38 were receiving some

type of special education or training. Thirty-two were in community pro-

grams and six were in a program at BRS&H. Nine of the 15 BRS&H residents

and 14 of those living in the community were not in training or educational

programs.

Only three of the parents interviewed expressed the belief that their

child did not need educational services. These three were parents of very

M. 72

66

severely handicapped youngsters. Eight expressed great dissatisfaction with

the fact that nothing was available for their child.

Most of the services in the region were EMR programs. Only a few

schools provided MIR programs. There appeared to be wide variation among

the education/training services available to retarded youths living in the

community. Some children were involved in well developed, full day, five

day a Week programs whereas others attend school for one or two hours per

day for purely'sOcial purposes. It would appear that some schools view the

provision of special education as an unessential service rather than a

necessary and integral part of a total school program.

Several of the mentally retarded youth interviewed during the course

of this research project expressed anxiety about being in a special education

class and being segregated from other classes attended by "normal" children.

All felt that being in a special class labeled them as a "dummy."

COUNSELING SERVICES

All of the parents interviewed were asked several questions about

counseling services for themselves and their retarded child. A substantial

number of parents in all four research groups expressed confusion about

counseling. They were uncertain what counseling was and even when it was

explained by the interviewer, some were still unsure whether they had, in

fact, ever received counseling. Several parents associated counseling with

having serious emotional problems or "being crazy." It is likely that many

parents have failed to seek professional counseling because of the stigma

they have attached to such services.

ite

5:;*

ry

67

Of the 61 sets of parents interviewed, 16 reported that their retarded

child was not receiving counseling services and 26 of the 46 were not sure

whether such service was needed. Only 15 of the 61 parents reported that

their retarded child was receiving counseling and this included five

parents who simply presumed that their child was receiving counseling at

the BRS&H. Most of the other 10 reported that their child was receiving

counseling from public school personnel.

When asked about counseling services for themselves, only seven

parents reported that they were currently receiving counseling services.

Of the 54 who were not receiving counseling services, six expressed an

immediate need for counseling, eight felt they would need counseling in

the future and 17 believed that counseling services would not be needed.

Twenty-three were unsure about their need for counseling.

Given the many frustrations and problems revealed by the parents

during the interviews, it appeared that many parents would benefit from

appropriate and relevant counseling services. Unfortunately, most parents

were not receiving counseling and many have not sought such services.

The parents who had received counseling were also asked how satisfied

they were with the counseling. This question yielded very mixed responses.

Some were fairly satisfied and some were quite dissatisfied. Their satis-

faction or dissatisfaction seemed unrelated to the profession of those who

had provided the counseling. This is consistent with the conclusion reached

by Wolfensberger, After a review of literature related to parent-profession-

al relationships, dissatisfaction with professionals commonly expressed by

parents and the claims of expertise by various professional disciplines,

'74Q.

68

Wolfensberger (1967) suggests that a counselor's professional affiliation

is irrelevant:

I suggest that a counselor's professional affiliation is irrele-vant. Possession of a medical or any other degree neither quali-fies nor disqualifieS a person from counseling and managing par-ents. Instead, the following criteria are proposed as relevant:(1) knowledge of the broader medical, social, educational, habili-tational, behavioral, etc., aspects of retardation; (2) knowledgeof resources in the broadest sense (i.e., agencies, services,long-range local prospects, reading materials, "gadgets" usefulin home management, etc.); (3) competency, acquired through train-ing, in counseling principles and techniques in general; (4) ex-perience in the applied-clinical area of retardation; (5) freedomfrom stereotypes about retardation; (6) possession of genuinelypositive attitudes toward retardation, the handicapped, and theirParents; (7) an orientation to the current community centeredmanagement approach; (8) a sensitivity to the reality needs ofthe family; (9) willingness to go beyond traditional approachesto help parents, even at the cost of personal convenience; and(10) great patience. (p..355)

SHELTERED WORKSHOP AND SHELTERED EMPLOYMENT SERVICES

Only three of those in the study population were participating in a

sheltered workshop or employment program. This was undoubtedly related to

the fact that this Project focused on children and youths. It was inter-

esting, however, that five parents felt an immediate need for this service

and 27 assumed their child would need such a program in the future. Thir-

teen parents expressed the belief that their child would never need this

service and another 13 expressed uncertainty about this need. This seemed

related to the low expectations some parents had for their retarded child.

Quite a few of the parents expressed confusion over workshop and shel-

tered employment services. Many, for instance, tended to equate work

activity with sheltered workshops' services. Few parents seemed aware of

other work-related options such as sheltered work stations in regular

75

69

commerce and industry, on the job training, etc.

EVALUATION AND DIAGNOSTIC SERVICES

Evaluation and diagnostic services were probably the one service area

which was least understood and most confusing to parents. All had utilized

some type of evaluation/diagnostic service but many expressed uncertainty

about whether it had been adequate and whether additional evaluation was

needed.

Only four parents were of the opinion that further evaluation was not

needed. Fourteen felt an immediate need for evaluation/diagnostic services

and 15 wanted additional diagnostic workups for their children in the

near future. The other 28 expressed confusion and uncertainty about the

need for this service.

The high degree of confusion surrounding evaluation/diagnostic services

is undoubtedly related to the fact that this is one of the more technical

service areas and one farther removed from their own life experience. Also,

it is probably related to the emotional impact of a diagnostic workup.

Several parents complained that professionals did not spend enough time

explaining the diagnostic findings or used terminology they could not under-

stand.

Some parents were fairly satisfied with the initial diagnostic/evalua-

tion services they had experienced. Those who were not tended to continue

to 'shop around' and seek out other professional opinions. Whether or not

the parents seemed satisfied appeared to be related, in part, to the coun-

seling and guidance they received at the time of the diagnostic workup and

the amount of time the professional(s) had spent with them.

70

MEDICAL CARE

All but two of the 61 sets of parents reported that their child

was receiving medical care. Aside from those receiving medical services

at the BRS1H, all other retarded persons in the study population received

medical care from a physician (usually a general practitioner) in their

home community or in a nearby community.

Most of the parents reported satisfaction with the medical care they

had secured for their child but many reported that they had to 'shop

around' in order to find a physician who seemed accepting of and interested

in their retarded child. Judging from reports provided by parents and

information gathered from BRSH staff, it appears that many physicians are

not well informed about the developmental disabilities (especially seizure

disorders). The tendency of some physicians to encourage institutional

placement rather than assist the family to explore alternatives to institu-

tional care indicates that they lack knowledge about community based

programs or are unnecessarily pessimistic about mental retardation.

DENTAL CARE

Of the 61 sets of parents interviewed, 22 reported that their retarded

child was not receivin regular dental care. Four of these were parents of

youths at the BRW.

Many parents of noninstitutionalized youths reported difficulty in

finding a dentist interested in providing service to their child. Most

parents found a dentist by 'trial and error' or upon the recommendation of

77

other parents of retar

type of register be e

71

ildren. Several parents suggested that some

shed as an aid to parents wanting to locate

a dentist for their retarded child.

RECREATION

Twenty-three of the 61 individuals studied were involved in recreation

services. TWelve of these were reportedly obtaining recreation through

special education programs, seven were receiving recreation at BRSE1H and

five were in other programs. A total of twenty-nine youths, including eight

at BRSUI and 21 living in the community, were not participating in recrea-

tional programs for the mentally retarded. It was not possible to determine

if nine of the 61 youths were in programs.

Seventeen of the parents expressed an immediate need for recreational

services oriented toward the mentally retarded. Seven parents did not

believe recreation was needed by their child and three believed some type

of recreational service would be needed by their child in the future.

In discussing recreational services with parents and professionals,

it became evident that public programs such as city recreation departments

have been reluctant to serve the mentally retarded. This problem seems to

exist in spite of the fact that public programs are to serve all citizens.

NARC MEMBERSHIP

Nineteen of the 61 sets of parents interviewed were active members of

the National Association for Retarded Citizens. Six others had been NARC

members in the past. However, the majority of parents interviewed had never

belonged to the NARC.

r70,4_ 78

72

Of the 25 parents who had institutionalized their child, only two

were still NARC members and six others were past members. This finding

seems noteworthy when one considers that NARC membership is a highly useful

means of keeping in touch with new trends and learning about new community

services.

While the data were limited, it appears that there is a direct relation-

ship between NARC membership and a favorable attitude toward deinstitution-

alization. Those who were most interested in the development of alternatives

to institutional care were usually parents who were active in the NARC.

There were some indications that parents of institutionalized children

avoided NARC meetings because the emphasis given to community services made

them feel guilty for having placed their child in an institution.

RECOMENDATIONS

PLANNING, PROGRAM DEVELOPMENT AND SERVICE COORDINATION

Recommendation. In keeping with modern trends, the goals and design

of programs and services should conform with the developmental model and

principles of normalization.

Recommendation. Persons involved in the planning and operation of

services and programs should receive special training in normalization

principles and developmental concepts.

Recommendation. To the greatest extent possible developmentally

disabled persons, parents and parent group representatives, professionals

and interested citizens should participate and share in decision making

related to the planning and development of a comprehensive service system

in Western Montana. The insights and perceptions of service consumers

should not be discounted by professionals and program planners. Neither

should the knowledge and experience of professionals be devalued by con-

sumers of service.

Recommendation. In keeping with the principle of normalization,

generic services should be utilized wherever and whenever possible. Ideally,

the utilization of a service should not require that the consumer be

"labeled" mentally retarded or developmentally disabled as a criteria for

eligibility.

Recommendation. In order to enhance the coordination of services and

increase accountability, the roles and responsibilities of various service

providers and agencies, (e.g., BRSW staff, County Social Service personnel,

D.D. Bureau personnel, etc.) should be clearly defined. Statements of

73

80

74

agency roles and responsibilities should be available to parent groups

(e.g., ARC Chapters) and other interested persons in a position to monitor

services and function as a client advocate.

Recommendation. Since the creation or expansion of programs for the

developmentally disabled by nonprofit corporations usually entails an

initial outlay of funds (e.g:, staff, equipment, space, etc.) prior to

reimbursement for purchaseable services by state agencies, sufficient

'start up' funds must be available to these programs during the first months

of operation.

Recommendation. Serious study should be given to the desirability

and feasibility of creating a single agency in each of Montana's five

regions which would provide or coordinate comprehensive medical, educational,

social, vocational and other services to the developmentally disabled.

(This single agency concept is utilized in many states, e.g., Nebraska,

Washington, California, etc.). Such an agency would be responsible for

follow along services for the D.D. client and his/her family and also

serve as the 'fixed point' for information and referral. This agency

would serve as the link between the community and BRSW. All referrals to

and from the BRSW would pass through the agency. Institutional care

would be used only when community alternatives could not be secured. The

agency should be highly publicized, visible and accessible. The suggested

single agency should be responsible and responsive to a regional board of

directors composed of consumers of service, professionals and interested

citizens.

It is important to note that there are good arguments for and against

the single agency concept. The basic argument in favor of the concept is

r. 81

75

that it focuses additional attention and resources on the needs of the

mentally retarded and developmentally disabled and should, therefore,

result in improved services and a better coordinated service system for

this specific group of citizens. A significant argument against the

concept is that it creates a 'special agency' and therefore departs from

normalization principles which emphasize integration and the utilization

of generic services rather than the creation of special services which

remove the retarded from the mainstream of the human service delivery

system. It can also be argued that the creation of a separate agency

further fragments the already fragmented human service system and generates

additional competition for the scarce human service dollar.

QUALITY CONTROL OF SERVICES

Recamnendation. Community based programs should undergo regular

evaluation. PASS-3 and the J.C.A.H., Standards for Community Agencies

Serving Persons with Mental Retardation and Other Developmental Disabilities

are two approaches which can be used to evaluate and constantly upgrade

service quality. Funding should be withdrawn from community programs which

fall short of accepted levels of quality.

Recomendation. To the greatest extent possible, programs within the

developmental disabilities service system should utilize the same or similar

terminology and method of client record keeping. Such uniformity across

programs facilitates program evaluation and the monitoring of client progress.

Recommendation. Since parents and interested citizens can be invaluable

program monitors and advocates for quality services, ARC Chapters and D.D.

Regional Councils should make special efforts to provide these individuals

76

4

with informatPon that will help them to assess program quality. Many

parents in N9,braska, for example, have been given training in the PASS

approach to evaluation. Armed with this conceptual framework they are in

a potition to offer constructive criticism to professionals and exert

pressure toward the upgrading of community services.

ADVOCACY

Recommendation. Citizen advocacy programs should be established to

service retarded persons living in the community and for those living at

BRSGH. According to the NARC Handbook for Residential Services Committees

(1972):

...citizen advocacy is concerned with providing the individualwith support in coping with the practical problems of everydaylife as well as support in the area of his emotional and socialneeds. The advocacy role should not be exercised by governmentalagencies or professionals functioning in their professionalcapacity, but rather by competent and suitable citizens who arefree of relationships which might result in a conflict ofinterests between the needs of the retarded person being servedand the agency providing services to that person. (p. 20)

Recommendation. Both the BRSU1 and community based programs should be

monitored by an independent advocacy organization which does not depend

upon existing agencies or governmental structures for its funding. (Various

forms of Citizen Advocacy Programs are described in Wolfensberger and Zauha,

Citizen Advocacy, Toronto: National Institute on Mental Retardation, 1973).

COUNTY SOCIAL SERVICES

Recommendation. Given the demands of--and broad responsibilities

associated with--the placement of formerly institutionalized individuals

into the community, county social service departments must be enlarged. It

8-3

77

appears desirable that additional workers specialize in developmental

disabilities rather than carrying diversified caseloads.

An alternative to the above would be the creation of a special D.D.

agency in each region responsible for follow along and case management.

The of Washington has, for example, utilized this approach.

Recommendation. Since the D.D. service system has been regionalized,

county social service workers should be free to travel to other counties

and perform necessary tasks without regard to traditional county boundaries

and identities.

Recommendation. The availability of relevant in-service training and

staff development programs related to D.D. services must be expanded.

Required or manditory attendance by county social service workers should

be considered. Workloads must be adjusted so as to encourage participation.

The acquisition of new skills and knowledge should be rewarded by promotion

or salary increases.

PLACE' ENT PROCEDURES

Recommendation. To the greatest extent possible the resident, his/her

parents and/or other responsible persons directly concerned with the

resident's well being should be involved in formulating the placement plan

and in formulating goals.

Recommendation. In order to facilitatp the direct and rapid exchange

of relevant client information necessary for appropriate placement, channels

and procedures for communication between BRS&H social service personnel and

SRS county social service staff must be simplified and streamlined.

84

78

Recommendation. In order to enhance interagency communication, BRSW

staff should make regular visits to community programs. Likewise, county

social workers and other providers of community based services should make

regular visits to BRSW. Joint seminars and case conferences should be

utilized to exchange case management information. BRSW and county social

service travel budgets must be adequate so as to permit such exchanges.

Recommendation. In order to avoid the disruption of client programming

(e.g., programs of behavior modification or skill acquisition) begun at

BRSW and assure a continuity of training methodology, BRSW staff should

be available as consultants to community based providers responsible for

serving the formerly institutionalized person.

Recommendation. Prior to the placement of an individual from BRSW a.

county social service worker and other relevant community providers should

visit and observe the individual at BRSW and, participate in a case review

with BRSW staff. To the greatest extent possible, an individualized case

plan should be developed prior to placement. The plan Should contain both

short-range and long-range goals plus at least one optional plan in case the

preferred plan is unsuccessful. This plan should be reviewed and revised

within two or three weeks after community placement.

Recommendation. Whenever desired and feasible, the BRSW resident

under consideration for placement should visit the community programs in

which he will participate and the community in which he/she will live prior

to the final decision on placement from BRSW.

Recommendation. Serious consideration should be given to the use of

a 30 day trial community placement prior to the final decision affecting

release from BMW.

85

79

'Recommendation. BRSW staff should make special efforts to maintain

contact with 'the parents of BRSW residents, especially the parents of

BRSW residents under consideration for community placement. Ideally,

regular personal interviews should be utilized (at least two or three times

per year). Letters, telephone calls and newsletters should be used tp

supplement personal contact with parents. Parents should'be provided with

current and specific information about their child's progress, service

needs, likes, dislikes, etc.

Recommendation. Those concerned with deinstitutionalization need to

develop methods of informing the parents of institutionalized persons about

community based alternatives to BRSW. Such methods must be low keyed and

nonthreatening. Personal contact is undoubtedly the best methodd. Parents

must not be made to feel guilty for having placed their child in an insti-

tution at a time when no alternatives existed or for having followed the

advice of professionals who were unaware of alternatives.

Recommendation. Before an individual is placed out of BRSW, his/her

exact legal status should be reviewed and defined. The need for guardian-

ship should be assessed. This assessment should be done jointly by BRS&H

staff, County Social Service personnel, parents, citizen advocates and other

concerned persons. In all cases the rights of the BRSW resident should be

protected. If a guardianship is deemed necessary, this should be established

before BRSW's responsibility is terminated.

Recommendation. Mehtally retarded individuals should not be placed in

facilities for the mentally ill except when clearly appropriate for clinical

reasons. Similarly, the mentally retarded should not be placed in facilities

for the aged unless the mentally retarded person is aged and in need of such

programs.

80

PREVENTION OF INSTITUTIONALIZATION

Recommendation. On the basis of data gathered during the course of

this study, it would appear that several strategies might serve to reduce

the number of institutional placements from Western Montana. These are:

(1) modify the beliefs and attitudes of physicians toward institutional

care; (2) develop services (e.g., respite care) which would reduce strain

on the family; and (3) develop appropriate community based residential and

support services and inform the public and professionals of their existence.

Recommendation.' Greater emphasis must be placed on early childhood

and preschool t.ajaing for the mentally retarded child. Infant stimulation

programs shoula also be available. There is also a great need for pro-

grams of parent training which will provide parents with skill in-the home-

based training of their own child.

RESIDENTIAL SERVICES

Recommendation. Special programs for parents, in-home trainers and

consultants, respite care and necessary financi 1 assistance should be avail-,

able to all parents and siblings who desire to keep their retarded child,

brother or sister in their own home. Highest priority should be given to

the creation of those community services and family support programs which

will allow parents to keep their child in their own home for as long as

desired and/or culturally normative. Community based residential services

should be available to retarded pe'rsons who cannot or no longer desire to

remain with their parents or natural, family.

;?.

81

Recommendation. A wide array of community based residential services

should be created (e.g., infant nursery and developmental programs, child

development hostels, intensive behavior management units, training hostels,

crisis assistance homes, supervised apattments, adoptive homes, foster

homes, gioup homes, etc.). In keeping with normalization principles, the

size of these residential services should not exceed that of a large family

(e.g., eight persons) and be a typical residence in both appearance and

location.

Recommendation. Various forms of group, homes and foster homes are

among. the most needed alternate living arrangements for the mentally

retarded now in BRSW, those who can no longer remain with their parents

and those who desire a change in their current living arrangement. Payments

available to group homes and foster homes should be raised to a level which

will facilitate the development and expansion of these 'resources.

Recommendation. An aggressive program for foster home recruitment

should be launched. Components of the program should include: (1) public

service announcements on radio and television; (2) appearances on "talk"

and news shows; (3) brochures distributed in public buildings, churches,

shopping centers, etc.; (4) speeches given at high schools, universities,

service clubs, etc.; (5) word of mouth by present foster parents and staff;

and (6) newspaper advertisements.

Recommendation. An aggressiVe recruitment program for group home

personnel should be launched.

Recommendation. Supplemental payment should be made available to

those foSter parents and group home personnel who provide training to the

children or adults in their care.

82

Recommendation. Special training programs should be available and

manditory for foster home parents and group home personnel. In order to

reduce turnover and 'burn out' problems, respite care and other support

services should be available to foster home parents and group home personnel.

Recommendation. In keeping with the developmental model and normaliza-

tion principles, no placement should be consideree'permanent.' All place-

ments and client programming should be aimed toward helping the retarded

person move toward ever greater independence and a less restrictive environ-

ment.

Recommendation. In keeping with recent legal decisions, residential

services should adhere to the principle of 'least restrictive alternative.'

Recommendation. Nursing homes should be used only for those individuals

needing nursing care. As soon as possible, individuals so placed should

move to a less restrictive environment. Nursing homes should not be used

as a substitute for foster homes or group homes.

Recommendation. Those responsible for placement into and from group

homes should adhere to laws concerning tenant rights. For example, since

an adult group home resident is essentially a tenant paying rent for a place

to live, he/she should be afforded a 30-day notice prior to a placement

change or a change in the rental agreement. Moreover, persons in community

residential services should not be subject to indiscriminate moves or

transfers without regard to the individual's desires.

Recommendation. Federal agencies such as H.U.D., the Small Business

Administration, etc., should be consulted in an effort to make use of

federal funds available for the purchase of group homes.

89

DIAGNOSTIC AND EVALUATION SERVICES

Recommendation. The initial diagnostic workup must be viewed as a

very critical period for parents. Explanations by professionals must be

unhurried, simple, thorough and individualized. Technical language should

be avoided. Counseling should follow the explanation of findings. Sub-

sequent to the evaluation, follow along services should be provided in

order to make sure that the parents really understand the findings and also

secure the services needed by their child.

Recommendation. Follow up activities, subsequent to diagnostic and

evaluation sessions, should be expanded. Greater emphasis must be placed

on early childhood screening, detection and intervention. However, the

hazards of premature labeling must be recognized and avoided. A single

source of data (e.g.,,an I.Q. score) should not be used to establish a

diagnosis of mental retardation. Rather, a wide variety of data (standard-

ized test data, clinical observation, social history, observation of

behavior in natural settings, etc.) must be utilized. For these reasons

multidisciplinary teams should be involved in the diagnostic process. For

example, diagnostic teams should consist of physicians, speech and hearing

specialists, social work specialists, psychologists, learning disabilities*04

specialists, public health nurses, etc.

FOLLOW ALONG AND CASE MANAGEMENT

Recommendation. Notable deficiencies in Montana's current service

system for the developmentally disabled are in the areas of follow along,

individual program planning and client program coordination. Service

90

84

systems in many other states have similar deficiencies. Only a few states

(e.g., Nebraska, Connecticut) appear to deal effectively with this complex

aspect of service delivery.

Recomendation. As a meansof correcting these deficiencies, it is

suggested that relevant agencies, adhere to principles and guidance offered

by the Standards for Conumity Agencies Services, Persons with Mental

Retardation and Other Developmental Disabilities (3.C.A.H., 1973). Portions

of the Standards are presented below.

Definition. The individual program plan is a written plan ofintervention and action that is developed, and modified atfrequent intervals, with the participation of all concerned.It specifies.objectives and goals and identifies a continuum ofdevelopment, outlining projected progressive steps and thedevelopmental consequences of services.

Principles. An individual program plan should be developed foreach'person accepted for service, regardless of chronologicalage or developmental level. The plan should be based onindividual assessment data and on other data that assist in

understanding the client's situation, and it should be developedby the relevant staff of the agency serving the client, with theparticipation of the staff of other agencies involved in servingthe client, and with the participation of the client and hisfamily. A plan developed prior to the onset of services by theagency should be reviewed and updated, so as to meet the currentneeds of the client. Long- and short-term objectives should bestated separately and within a time frame., and they must beexpressed in behavioral terms that provide measurable indices ofprogress, and that enable the effectiveness of interventions to

be evaluated. Modes of intervention for the achievement of thestated objectives must be specified, and agencies capable ofdelivering the needed services should be identified. The indivi-dual program plan must be modified as goals and objectives are,or are not, attained. Review and appropriate revision of theplan must be a continuous and self-correcting process. The anmust help all concerned to coordinate their efforts and activities,so as to maximize services to the client.

Definition. Follow along means provision for a continuing rela-tionship with the client and his family, which may be life-long,if desired, for the purpose of assuring that changing needs arerecognized and appropriately met. The agency also acts as a point

P. 91

85

of reference for those who have left a service, but who mightseek support or guidance as needs arise.

Principles. Follow along should assure the client of the rightto a life-long service, if desired. The service should bedesigned' to assure movement toward long-range goals by a processthat monitors placement and that provides appropriate support,counsel, and help.

Definition. Client program coordination is the process by whichresponsibility for implementation of the client's individualprogram plan is established. The client program coordinatingprocess includes providing support, procuring direct services,coordinating services, collecting and disseminating data andinformation, and monitoring the progress of the client.

Principles. Upon acceptance for service by an agency, each clientshould be assigned a client program coordinator whose duty is toensure the proVision and the effective continuation of necessary,services. The client program coordinator should be responsiblefor the development and implementation of the client's individualprogram plan, and for assuring that all relevant staff within orwithout the agency, as well as the client and his family, focustheir efforts on attaining the objectives specified in the plan.The client program coordinator's function should be terminatedonly when responsibility for service to the client has beeneffectively assumed by another agency, at which time a newclient program coordinator should be assigned by the agencyassuming responsibility. A client may have more than one clientprogram coordinator if he is receiving services from more thanone agency. The ultimate client program coordinator is thefamily or the client himself.

Recommendation. Those responsible for providing follow along services

should have a good understanding of the developmentally disabled, D.D.

services, and training in behavior modification and management.

Recommendation. Individual program planning should be made by a

transdisciplinary team.

Recommendation. Follow along services and approaches, individual

program planning and client program coordination should be so designed and

structured to assure the successful community placement of 8R,SUI residents

and the continuation of client training and treatment programs begun at

the BRS&H.

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INFORMATION AND REFERRAL

Recommendation. An Information and Referral service should be estab-

lished in each of Montana's five regions. This would provide a fixed point

of referral for each region's system of service. Ideally, I E R should be

integrated with follow along and case management services and provided

within a single agency.

Recommendation. A set of service terminology and definitions should

be developed. These definitions should be simply written and understandable

to parents. Definitions should be widely distributed among service providers

and ARC chapters..

Recommendation. A region-wide directory of services and resources

should be prepared and widely distributed to parents and providers of

service. Newspapers, public service announcements on radio and TV and

other means should be utilized to inform people of available services.

Recommendation. A pool of informed and experienced parents should

be available to accept referrals from physicians in order to provide infor-

mal counseling and emotional support to parents who have recently given

birth to a retarded child or have learned that their child is retarded. It

is suggested that ARC chapters establish this community resource.

ECONOMIC ASSISTANCE

Recommendation. The Social Security Office in conjunction with Public

Welfare and Public Health personnel should develop and implement an aggres-

sive outreach program for developmentally disabled children and adults who

might be eligible for SSI benefits.

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Recommendation. A lack of income should not prevent retarded persons

from obtaining needed services. Sliding fee schedules or family financial

supplements should be implemented. No one should be denied services

because of an inability to pay.

Recommendation. In view of the fact that those services funded by

Title XX of the Social Security Act require income testing, such procedures

should be as simple as possible and conducted in a manner which will mini-

mize the stigma associated with use of the means test in social welfare

programs.

RECREATION

Recommendation. Recreational services should be available to all

mentally retarded persons needing and wanting such services. However,

special programs for the retarded should not be created unless absolutely

necessary. In keeping with normalization principles, the mentally retarded

should participate in generic programs such as those provided by the YMCA,

YWCA, city recreation departments, etc.

Recommendation. Mentally retarded persons and other developmentally

disabled persons should be provided with training necessary to facilitate

their use of existing community recreation and leisure time activities

(e.g., movies, camping, bowling, etc.).

TRANSPORTATION

Recommendation. Individuals should not be prevented from receiving

needed services because of a lack of transportation to and from the service

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program. Neither should families be forced to move in order to secure

services for their child. Transportation services should be available to

all those needing it. The development Of public transportation in all

major communities should be promoted. Developmentally disabled persons

should be trained in the use of public transportation. In the absence of

public transportation, special transportation for the developmentally

disabled will be needed. In keeping with normalization, however, special

transportation services should not be created where generic services exist.

MEDICAL AND DENTAL SERVICES

Recommendation. Parent groups such as ARC Chapters or information and

referral centers should develop and maintain a list of physicians, dentiSts

and optometrists who have expressed an interest.in serving mentally retarded

persons and/or have demonstrated special skill in dealing with the mentally

retarded patient.

Recommendation. D.D. Service providers and ARC Chapters should make

a special effort to develop, informational programs and/or written materials

which would inform physicians of developments in community based services

and counteract the belief that custodial or institutional care is the only

alternative for the severely and profoundly retarded.

Recommendation. Various forms of in-service training on interaction

and communication with mentally retarded persons should be made available

to hospital personnel, physicians and other medically related professionals.

'Recommendation. Special training programs should be available to

physicians, dentists, nurses and other health care personnel who desire to

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acquire special knowledge and skills related to the proper management of

patients who are mentally retarded.

Recommendation. Parents and guardians of retarded and other develop-

mentally disabled persons should be encouraged to review their private

health insurance policies in order to gain a thorough understanding of

coverage and exclusions from coverage.

Recamnendation. In order to facilitate the utilization of medically

related social service benefits provided by certain private health insurance

programs, consideration should be given to the passage of a state licensure

law for social workers. (Several insurance companies restrict third party

payments to social work practitioners regulated or certified by state law.)

EDUCATIONAL SERVICES

Recommendation.. Programs of regular and special education should be

available to all children regardless of handicapping conditions. Education-

al programs should be available to school age youth in BRSETH and those

living in the community. (Montana legislation has mandated education for

handicapped individuals by 1979.) School bus transportation should also

be available to all mentally retarded students needing assistance in getting

to and from school. School buses should provide transportation to and from

the students' homes (i.e., door to door).

Recommendation. The segregation of the mentally retarded within

educational settings should be avoided. To the greatest extent possible,

the mentally retarded student should be integrated into regular classes

and regular school activities. However, integration does not mean the

haphazard "dumping" of retarded persons into regular classes without regard

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to the individual's handicap, needs or desires. Neither is it forcing

such students into impossible competitions. Integration requires highly

qualified teachers who are capable of individualizing educational approaches

and of being conscious of the student's readiness, his/her likelihood of

success in the educational milieu.

PROTECTIVE SERVICES AND GUARDIANSHIP

Recommendation. Law and administrative procedures relating protective

services (e.g., guaildianship, conservatorship, trusts, etc.) should be

clarified. If such services are needed for an individual, the least

restrictive alternative possible should be utilized.

OTHER SUPPORT SERVICES

Recommendation. A wide array and continuum of community based support-

ive services must be developed in Western Montana. Without such services,

deinstitutionalization for the Western Montana citizens now at BRSUI will

be impossible.

Recommendation. Greater attention must be given to development of

community based programs for the severely and profoundly retarded and the

multiply handicapped retarded of all ages. A consortium between general

hospital, special education and other community agencies should be explored

as a means of developing the developmental maximation units in major

Western Montana communities. (See Menolascino and Pearson, Beyond the Limits,

1974)

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Recommendation. Speech therapy and language development services,

physical therapy, toilet training, behavioral modification, self-help

training and similar specialized services should be available to all

retarded persons needing these services.

Recommendation. Since corrective measures introduced in early child-

hood can reduce the severity of the handicap and sometimes reverse its

course, a whole range of services should be available to the preschool

developmentally disabled child. This should include early diagnosis,

infant stimulation, physical therapy, speech therapy, respite care, parental

education and training, etc. Wherever possible, such services should be

integrated with regular public school programs so as to provide a continuum

of training and educational services.

Recommendation. Counseling services should be available to retarded

individuals axd their parents. To the greatest extent possible, the

stigma associated with counseling should be eliminated.

Recommendation. Workshops on counseling with the retarded and the

parents of retarded persons should be available to professionals, parents

and interested citizens. Better use should be made of persons meeting

Wolfensberger's criteria for being a good counselor, regardless of

professional affiliation, formal credentials or lack thereof.

Recommendation. Part time or respite care services should be estab-

lished in major communities throughout the region. Respite care can be

provided in or out of the parents' homes. Such programs might take the

form of a corporation of trained baby sitters, homemaker service, vacation

or weekend care, nursing service, etc. Various types of respite care have

been described in Respite Care for the Retarded, by Paige, (1972). One

room within each group home can also be utilized for respite care.

Po

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COMMUNITY EDUCATION AND INVOLVEMENT

Recommendation. A great variety of techniques and approaches should

be used to inform the public about mentally retarded and developmentally

disabled persons, their rights and existing services. These might include

the public showing of relevant films, program open houses, newspaper

features, public speeches and presentations, presentations on TV and radio,

etc. Special efforts should be made to reach potential employers of the

developmentally disabled and those whose actions and decisions could hamper

the development of community group homes such as local zoning authorities.

Recommendation. Regional and State D.D. Councils, Chapters of ARC and

others should make special efforts to inform parents, professionals and the

public about successful community programs.Personal visits to such pro-

grams appear to be the most effective method of public education. Since

the public seems to be more impressed by examples "close to home" than

examples found in another state or area, special efforts should be made to

establish outstanding examples in many parts of the state. These then

would serve as demonstrations of successful deinstitutipnalization approaches.

Recommendation. If deinstitutionalization is to succeed, federal, state

and local governments must demonstrate their continued and long-term support

of community based alternatives. One approach is to involve consumers,

community professionals, interested citizens, and public officials in the

establishment of long-range planning and budgeting for deinstitutionaliza-

tion. Wide public support for these long-range plans and endorcements by

political parties would do much to allay fears.

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Recommendation. The SRS Developmental Disabilities Bureau should

develop a library of books, films and other educational material which

could be made available to providers, parents and organizations. A similar

library should be created by the Montana Association for Retarded Citizens.

THE NAIVE OFFENDER

Recommendation. In order to meet the needs of the legal offender who

is mentally retarded, specialists in mental retardation, courts and law

enforcement personnel must engage in cooperative and coordinated effort.

A special task force should be established to study this problem in Montana

and formulate plans and programs.

Recommendation. Relevant in-service training programs concerning the

needs and behavior of retarded and developmentally disabled persons should

be made available to city, county and state law enforcement and correctional

personnel.

Recommendation. Each major community should create a pool of mental

retardation professionals or other informed and experienced individuals

who could be consulted and/or involved in the questioning of a mentally

retarded person suspected of or accused of a crime.

MANPOWER DEVELOPMENT

Recommendation. Relevant in-service education and staff development

programs on service to developmentally disabled individuals, both children

and adults, should be made available to professionals and paraprofessionals

working in school, mental health, public health, social service and similar

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programs. Both direct services and administrative personnel should parti-

cipate. It is critical that relevant staff development and in-service

training programs are made available to persons working in newly developed

programs and to persons who have had little or no experience in service to

the developmentally disabled.

Recommendation. Program administrators, staff development personnel,

providers and other knowledgeable persons should make a special effort to

identify and specify the type of training needed by persons working within

the service delivery system. In addition, decisions should be made regard-

ing what "mix" of formal preparation (e.g., university education), on-the-

job training and staff development is necessary to generate the various

types of skilled manpower needed to provide high quality services for the

developmentally disabled.

Recommendation. Given the fact that resources for staff development

and in-service training (e.g., personnel, films, books, etc.) are both

expensive and in short supply, interagency agreements should be utilized

to share and exchange such resources.

ARCHITECTURAL BARRIERS

Recommendation. Schools and all other public buildings should be

remodeled so as to permit easy entrance, exit and usability by physically

handicapped persons. Special funds must be available to group homes, foster

homes, and to natural parents for the construction of ramps and the elimina-

tion of architectural barriers such as narrow doorways, inadequate bathrooms,

etc. Care should be taken so as to minimize thy- impact of such modifications

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on the aesthetic features of the building. Modifications should conform

to the latest edition of American Standard Specifications for Making Build-,

ings and Facilities Accessible to and Usable by The Physically Handicapped,

published by the American Standards Association.

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REFERENCE LIST

Carter, G. Action research in community planning. Social Work Journal,

January, 1952, 33.

Edgerton, R., Eyman, R., & Silverstein, A. Mental retardation system.

In N. Hobbs (Ed.), Issues in the classification of children, 2, 62-87,

Jossey Bass Publishers, 1975.

Iiorejsi, C. Deinstitutionalization and the development of community

based services for the mentall retarded: An overview of conce ts and

issues. Missoula: University o Montana, Department o octal Vor

Joint Commission on Accredit%tion of Hospitals. Standards for community

agencies serving persons with mental retardation and other developmental

disabilities. Chicago, Illinois, 1973.

Kahn, A. The design of research. Social work research. Chicago:

University of Chicago Press, 1960.

Menolascino, F. & Pearson, P. Beyond the limits: Innovations in services

for the severely and profoundly retarded. Seattle: Bernie Straub

Publications Co., 1974.

Mercer, J. The myth of 3% prevalence. In G. Tarjan, et. al. (Ed.),

Sociobehavioral studies in mental retardation. Washington, D.C.:

American Association on Mental Deficiency, 1973.

National Association for Retarded Citizens. Handbook for residential

services committees. Arlington, Texas, 1972.

Paige, M. Respite care for the retarded (SRS-72-25034). Washington, D.C.:

U.S. Government Printing OfficeT7Eig, 1972.

Report to the legislators of the State of Montana on Boulder River School

and Hospital. Boulder, Montana, 1974.

Staff Report to the Joint Interim Subcommittee on Finance and Claims.

Community alternatives to institutionalization. Helena, Montana: State

Capitol, September, 1974.

U.S. Government Printing Office. A roposed program for'national action

to combat mental retardation. Was ington, D.C.: President's Panel on

Mental Retardation, 1962.

Wolfensberger, W. Counseling the parents of the retarded. In A. Baumeister

(Ed.), Mental retardation. Chicago, Illinois: Aldine Publishing Co.,

1967.

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REFERENCE LIST (continued)

WoIfensberger, W., f, Glenn, L. PASS-3 (3rd ed.). Toronto, Canada:National Institute on Mental RFE-Fdation, 1975.

Wolfensberger, W. CI Zauha, H. Citizen advocac and rotective servicesfor the impaired and handicappe . Toronto, Cana a: National Instituteon Mental Retardation, 1973.

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